Everything about Grace’s Spinal Fusion Surgery

In 2015, I first started asking Grace’s doctors in the UK whether they thought she was developing scoliosis. They took the picture on the right and said no. Knowing what I know now, she actually already had quite a significant curve. Flash forward to moving home to Florida and meeting her orthopedic surgeon at Nemours for the first time. Her first measurement was around the 90º mark and it held there for a few years.

After seeing many Rett girls having bad experiences with spinal fusion surgery, we decided that we weren’t going to do this surgery for Grace. I was so naive about what life dying of scoliosis would actually look like. It felt like an impossible choice. The surgery itself was just unfathomably savage when I watched it on YouTube. I was afraid. Afraid she wouldn’t recover. Afraid she would have irreversible nerve damage or her body would reject the hardware.

About 4 months ago, around Christmas, I was cuddling Grace on the couch and I sat her up. I was shocked to see the full extent of her scoliosis from a vantage I hadn’t seen it in years. Her little body had suddenly changed. I knew this was a possibility. I knew that sometimes, a curve will hold for years in a position and can suddenly worsen. I made an appointment for a new xray and we learned that her spine was now 120º and her ribs were resting on her hip bone. Although we were trying to avoid pain, she was in pain already. It felt like the decision had been made for us.

12 weeks before surgery and 8 days after

I wondered how much of her constant sleeping was just due to the exhaustion of holding up her body, enduring pain all day and the difficulty of breathing.

Surgery was scheduled for 8 weeks later. There are SO many appointments the lead up to a surgery like this. Including a Covid test which, to my shock and surprise, came back positive.

Grace had Covid. Grace, who never left the house, was only cared for by medical professionals and close family who all tested negative. It’s a mystery still. Nonetheless, her surgery was cancelled and her nurses had already taken the week off. So that week was pretty hellish and we waited 2 more months for surgery to be rescheduled. I took her to the same pre-op appointments again and she tested negative for Covid.

I had intended on doing a timeline of day-to-day events leading up to her surgery and in the days after, but I ended up doing this via Instagram Stories instead and you can watch that here.

Here are some quick facts:

In total, she has over 32 screws, 2 titanium rods and her spine is anchored to her pelvis.

The metal weighs about 7 lbs. She grew about 3 inches.

Before the surgery her S-Curve was about 120º and after, it’s about 60º. While some kids become perfectly straight, the surgeon said her spine was very stiff and couldn’t be straightened all the way. I wasn’t anticipating that possibility. I didn’t realize there was a chance she couldn’t be straightened all the way.

The biggest surprise was that she was sitting up in her chair the day after and the first week was relatively painless.

The second biggest surprise is that while other kids can still be in the hospital weeks later, Grace went home after 48 hours. Her recovery has been so much better than I expected, but still very hard.

Ask Me Anything

The thing I didn’t expect was how painful week 2 was.

The greatest joy is seeing her sitting up straight and not tipping over all the time!

Please use this link to AMA (Ask Me Anything) on Instagram to ask any questions you have about the lead-up or recovery from this surgery!

Add a comment...

Your email is never published or shared. Required fields are marked *

I’m not strong. I’m battle hardened.

I didn’t become “strong” because I wanted to; I became strong because I had to.

A woman I admire on Instagram, Jamie Lee Finch, said something today that hit me in the feels.

“I told my therapist this week that if I’m never called “strong” again for the rest of my life it will be too soon. “Strong” isn’t a personality trait you choose, it chooses you. I didn’t become “strong” because I wanted to; I became strong because I had to. And every time someone I don’t know expects me to be strong for their benefit or entertainment — or just doesn’t let me be anything else — I feel overwhelmed, unseen, and alone.”

In short, we didn’t choose this shit. This shit chose us.

Last week, I watched a tear jerking movie with Susan Sarandon & Kate Winslet. Susan Sarandon is dying. She says to her daughters, “I raised you to be strong women”. One daughter replies…”You didn’t raise us to be strong. You raised us not to inconvenience you with our weakness.”

And this is how it can feel when special needs parents are praised for being “soooo strong”. We didn’t choose this shit. This shit chose us. We’re not strong. We’re weathered. Pressure pushed us from all sides and a mountain erupted.

We survive.

We ask for help.

Sometimes, we retreat.

But mostly, we fight.

And we fight.

And we fight.

For the last few weeks, I’ve been supporting a Rett mom who lost her baby. I told her the same thing I tell every Rett parent:

This doesn’t get easier. You just get better at doing it.

Yet, in light of all this, I do feel strong. It’s just not the kind of strong I think people mean when they praise me for being so. Special needs moms have the stress hormone levels of combat soldiers. Except we do it FOREVER and the combat never ends.

We are battle-hardened warfighters.

Divorce in Rett syndrome families

Does having a kid with Rett syndrome increase the likelihood of divorce?

I think I forget sometimes that there are readers here who are actually following our journey and care about our life with Grace and Rett syndrome. I can be guilty of only coming on here to share the really big stuff.

But I’ve forgotten to share the biggest thing of all.

After Rett syndrome itself, it’s the biggest thing to have happened to our family.

Steven and I got divorced in March.

It’s hard to know the real “why” behind this happening. That is, what was the seed that germinated and grew into this event? I don’t totally know. Most breakdowns in relationships are just “death by a thousand paper cuts”. It could have something to do with the strain that special needs parenting brought to our lives, but perhaps not. We’ve always pretty much killed it as parents with an especially needy kiddo and had a great support system.

We got to go on cruises, vacations, climb mountains, have date nights. We weren’t especially limited in our ability to “have a life” outside of taking care of Grace.

41% of first-marriages experience divorce as it is (without the special needs element). It’s very difficult to know whether there’s an increased rate of divorce with special needs children in the mix. Previous estimates of 80% have been debunked. Other studies only looked at a snapshot in time versus the whole lifetime of a marriage.

Perhaps having an intense focus on something outside of ourselves can strengthen a marriage and give it purpose? Maybe the rate is even less than with typical marriages?

At the end of the day, the only thing I can really think to say to wrap it all up in a nutshell is that over the years, who we were as people fell out of alignment. Our basic life values, political views, religious beliefs and general approach to life became so vastly different that it was no longer compatible with continuing in a marriage relationship. Could have had something to do with Grace, but I suspect it was just general growth which saw our vines stretching toward light from suns in different solar systems.

It shouldn’t really totally be a surprise since I was 18 when we married. Show me someone in their mid-30s who is the same person they were when they were a teenager.

Reading about the process of divorce with special needs kids, and the difficulties parents have seeing eye-to-eye makes me appreciate how well Steven and I did working through the whole thing. We used just one lawyer and came to our own agreements ourselves with regards to a parenting agreement and financial settlement. We did this over the kitchen table and the lawyer just did the paperwork much like an accountant would do your taxes for you.

You can definitely do your own divorce, but we opted to pay an attorney to do this. It took 9 months from first acknowledging that our marriage was death rattles to the divorce being final. We lived together as a family the whole time and for 3 months after it was finalized.

Grace now has 24/7 nursing (which I’ll discuss in another post soon) and we’re the first family the nursing agency has where the child travels between two households. Every family they have with separated parents, the child in need just stays with the mom. We worked to provide Steven’s home with the same equipment she has at my house and he’s very dedicated to having her there during his timesharing periods. Having her cared for by the same nurses at both homes means a continuity of care and limits miscommunication between us about what she needs at any given time which limits the chance of conflict for us.

Mostly, we’re “still friends” as much as any divorced couple can be. We still laugh at stupid things and have a drink once in a while and talk about our forays into the dating world (aye yie yie) and actually, our communication skills have gotten better now that we’re no longer trying to manage a marriage on life support.

All’s well that ends well.

The Christian principle that created the perfect storm for Myka Stauffer

Note: In this post, I use the term “special needs” because that is the phrase used in this story. All adopted children have “special needs”. What we’re actually talking about here is the adoption of a disabled child (presumed brain damaged, later diagnosed autistic). I think the vernacular could have been cleaned up, but hey. You get the point.

Yesterday, I wrote about a couple who rehomed their adopted son because his special needs were too great.

I was unrelenting and harsh. Like many others, I believe they did a bad thing.

And today, I’m here to come to their defense. Because I also think they’re casualties of a profitable machine founded on making people question their own judgement.

There’s this one little line in the Myka Stauffer story which I haven’t seen commented on. It’s gone widely unnoticed but it’s so very revealing. One phrase which reveals how this all happened.

“God softened our hearts”

In an article in Parade, Myka says:

“We couldn’t wrap our heads around special needs adoption. We would just say, ‘No we can’t handle all of that, we just want a simple adoption.’ But as we let the idea soak in, God softened our hearts.”

They then adopted a special needs kid from China and called him Huxley. They were right. They couldn’t handle “all of that” and he was found a new family.

The Stauffers are Christians. I was raised Christian and have remained so throughout adulthood.

It is widely taught in Christianity that we are inherently bad. That we carry something called “original sin” and are born with a “sin nature”. The Bible says “you are not your own”. It also says that the sinful mind rejects God’s will. We are raised to reject our “flesh” and give in to God’s will for our lives. Songs we sing in worship sessions say that we aren’t worthy of God’s love. If not in God’s will, we’re “broken vessels” or “slaves to fear”. Chanting phrases like this for one’s whole life causes a sort of conditioning.

These teachings cause a sort of disembodiment for those raised in it. We do not trust our bodies or our minds. After suffering religious trauma for years, going back to church made me tremor inside. My teeth wanted to chatter but I clenched my jaw to stop it. My body was telling me that I wasn’t safe, but my spiritual conditioning was telling me “this is the devil trying to stop you from coming to church” and “your flesh is evil and just wants to stay home in bed”. So we disconnect from and mistrust our bodies, our desires, our comfort levels.

Myka reveals this when she says they DIDN’T WANT A SPECIAL NEEDS ADOPTION. They said “No we can’t handle all of that”. They knew what was right for their family. They knew what they could handle. They did not want to be special needs parents. Until they started to question their desires and, no doubt, felt they were rejecting God’s will. And their hearts were “softened” by God. Which is to say when they didn’t want that lifestyle, their hearts were hard.

Which is to say “God changed our mind about what we knew was right for our family”.

I wouldn’t have chosen to have a disabled child either. I had a healthy baby who developed this way over time and I love her deeply so it doesn’t matter. Which is very different than knowingly choosing to take a child with a disability. It was wrong what they did. But I am very familiar with the teachings that created this perfect storm and also blame this version of the Christian faith for making these people second guess the kind of adoption they knew they could handle.

Myka and Jim, I’m sorry you were conditioned to mistrust your own better judgement. You’re not alone.

The public shaming of Myka Stauffer

If you go to Myka Stauffer’s Instagram account, comments are turned off on her more recent posts. And it’s no wonder she’d do this. She’s facing the public shaming of a lifetime. Sponsors are dropping her although this scandal has seen her gaining 20,000+ new Instagram followers in the last 24 hours and a YouTube audience growth taking total subscriber-ship to over 700,000.

The Backstory

With a firestorm of controversy surrounding this issue, it’s going to be very easy for my readers to get up to speed on what happened here. The basics you need to know:

“A YouTuber with hundreds of thousands of followers who has shared her family’s experience of adopting a toddler from China announced on Tuesday that she and her husband had permanently placed their child with another family after unspecified behavioral issues.” –Buzzfeed News

Fans had noticed that Huxley, a child they had emotionally invested in through a YouTube channel chronicling his (crowdfunded) adoption journey from China, had disappeared from the family’s social media. The Stauffers ignored comments inquiring about his whereabouts. Account like “Justice for Huxley” were started to pressure the couple to come clean about where their autistic son had gone.

“There’s a lot more special needs we weren’t told about…we never wanted to be in this position” -Jim Stauffer

On May 26th, the Stauffers (a corporately sponsored YouTube and Instafamous family) finally posted a video explaining the disappearance of their special needs son, Huxley, saying things like, “With adoption there’s unknowns and things that are not transparent on files and things like that. Once Huxley came home, there’s a lot more special needs than we were aware of and that we were not told…we never wanted to be in this position.” They are being represented by lawyers who have encouraged them to say no more which tells you this isn’t a squeaky clean situation.

The reason they claimed that they had not responded to multiple requests from fans demanding to know why this child disappeared was to “protect Huxley’s privacy” which is rich considering the massive amount of money they’ve made by opening his life up until this point, without privacy or thought about how he could feel as an adult having his journey from China to the USA exploited to the fullest extent. They published 27 monetized videos about his adoption and included him in sponsored ads. Suddenly, they’re concerned about privacy.

“I didn’t adopt a little boy to share these things publicly” -Myka Stauffer

In the YouTube video, Myka says, “The reason we’re not going to let people know what happened to make us make this decision is for Huxley’s privacy…anything that happened in the home that was hard for Hux, that’s not for me to put out publicly so we’re not going to talk about that. I didn’t adopt a little boy to share these things publicly.”

What are these things that “happened in the home”? These are things like her duct taping his hand to stop him from sucking his thumb, a punishment she didn’t doll out to her not-disabled children.

On being rehomed like a rescue dog, the couple says, “the agencies have been allowing for Huxley to spend time with some different people to make the perfect match, the perfect fit for his new forever family. His new mommy has medical professional training.” Honey, I didn’t get professional training when my child’s paperwork failed to warn me she was gonna have Rett syndrome. THIS IS PARENTING. Suck it up, buttercup.

On that note, Myka Stauffer is a former RN (registered nurse) and I was a blogger when I got my own disabled child and look at me now. Nevermind his “new mommy”. Myka, herself, had professional medical training on which to rely when she (willfully and knowingly) received a child with additional needs.

Also on that note…where were these agencies when he was placed in their home in the first place?

And, lastly, Myka says in the video, “The reason I started my channel is to be positive and to bring people positivity.” Geez I’m sorry you couldn’t find any way to be positive about loving a special needs child. That he didn’t fit your pretty white Instalife and you had to move him along.

A moment to rant

It’s easy to be very surface level here. To write a post regurgitating the same facts every news outlet has already stated. But for the sake of purging myself of things I just can’t hold in, let me rant for a moment before I get to the point of this post:

  • THIS IS PARENTING. You don’t get a crystal ball to know the future. Birthed or adopted, sometimes, you end up with a child with special needs.
  • They claimed it was too hard on their other children. Yes, tell me about it. My boys have a very different life than they would have had if their sister wasn’t disabled. They’re also better people. What will the Stauffer kids remember from this? We had a brother. He was autistic. We got rid of him.
  • They had mentioned in the past wanting to also adopt an African kid. For the love of God don’t let these people adopt again.
  • What will they do if they give birth to a disabled child? This is very concerning to me.
  • I’m very happy Huxley is in a home that won’t abuse or exploit him. I’m happy he didn’t fall through the cracks. I’m very happy these people are no longer his parents.
  • I think this was about convenience and money. While they crowdfunded the adoption, Huxley’s ongoing therapies were going to cost $500 a month, but they decided to buy a $700,000 house instead.
  • Huxley is a Chinese person. No doubt he had a name before he was adopted. He was a toddler when they got him. They adopted an ethnic child and whitewashed him with a name only, like, the most, like, basic white family would, like, name their, like, child.

Whew! Ok, that feels better.

Evangelicalism and Adoption

The Stauffers are Christians who claimed that God led them to adopt Huxley knowing that he had special needs when previously they had “not been open to the idea of a special needs child”. In an article from Sept 2019, Myka says that they weren’t open to special needs but “after God softened their hearts”, they became “…open to almost every special needs in the book.”

It needs to be said that EVERY ADOPTED CHILD HAS SPECIAL NEEDS and the fact that they didn’t know this concerns me about the process they had to go through to be assessed for fitness as an adoptive family.

Quick and dirty adoptions exist within this industry and the process of international adoption can often look more like trafficking, with “orphans” from caring families who have a different understanding of adoption than Americans do. They agree to send their children away, thinking it’s temporary (for better education and opportunities) believing that the child will eventually return.

The fact that the Stauffers are Christians of some description concerns me because the evangelical christian church finds international adoption to be very fashionable. It’s having a moment to say the least.

Over a decade ago, we found ourselves in an evangelical cult and the leader and his wife adopted a kid from an Asian country and claimed they would adopt from all over the world “as a prophetic sign to the nations”.

The evangelical church is rife with adoptions that are about saving them from a life of paganism and adopting them “into God’s family”. An earthly and prophetic manifestation of the “sonship” one can experience when they surrender their lives to Christ. This is evident in the use of the phrase “coming home” in the christian adoption movement. Adoption being used as a method for “growing the kingdom” versus growing one’s nuclear family as adoption had previously been utilized by couples who couldn’t bear their own children, for example.

This feature of the church has concerned me for some time. I’m concerned that evangelicals view adoption as a new front in the culture war. A way to invest themselves into human rights issues without really needing to do something about it. In the war on abortion, for instance, adoption had been prescribed as the solution, however, international adoption is far more prevalent than adopting children right here in America which is confusing considering the cost ($25-$50k) and requirements of international adoption can be so much more taxing. Unless you go with an agency who trafficks children from families with a culturally different understanding of adoption and the paperwork they’re signing when they send their children to America.

A few years ago I read a book called The Child Catchers: Rescue, Trafficking and the New Gospel of Adoption. In it, author Kathryn Joyce explains the fashionable nature of adoption inside evangelicalism and the ways in which children can be trafficked and given into adoption by parents who don’t understand that they’ve giving their children away for good.

“Evangelicals felt that they had kind of unfairly lost a claim to the good works side of Christianity, the social gospel, the helping the poor…and so they wanted a way to get back into doing something for poor people’s rights, and adoption and orphan care came about as something that, I think, they could really invest themselves into without challenging or changing their stances on the other social issues that they care about.” -Kathryn Joyce

I don’t know enough about the Stauffers to know how Christianity may have played a role in their adoption of Huxley, but this alarming trend gives cause for me to ponder on whether this young, affluent couple understood that adopting a child isn’t like rescuing a dog. They appeared to have, in hindsight, approached it as though they thought they were getting a pretty Labradoodle and ended up with a dog who required expensive monthly grooming and peed on the carpet. So they rehomed it.

Or worse, they were acting as entitled white saviors who thought they were doing some good in “the third world”.

Misogyny in the case against Myka Stauffer

I wonder how much of a role misogyny is playing in this situation. From news outlets like Buzzfeed, Elle Magazine, BBC News, People and NBC every article leads with Myka’s name. Titles like:

  • YouTuber Myka Stauffer under fire for relinquishing custody of son with autism
  • Adoption is complicated—and the Myka Stauffer controversy proves it
  • Myka Stauffer Loses Thousands of Subscribers After YouTube Mom Gives Up Adopted Son

While Myka clearly leads their social media channels, husband Jim has not at all been a silent part of this story. In fact, he does most of the talking in the video where they explain their son’s disappearance. Yet it is Myka facing the backlash and I wonder how much of this is about the pressure on mothers to be perfect while fathers failing is acceptable and not surprising enough to garner intense media scrutiny. This couple played an equal role in failing as parents to their son and I would like to have seen the weight of this public shaming be equally squared on the shoulders of dad Jim.

The Anger of Special Needs Parents

In the special needs and disability community, there is a special sort of anger for Jim & Myka who felt lied to and that they didn’t know he was so grossly needy when they decided to make him their son. I, myself, feel this anger hot in my chest. I didn’t get to hand pick my child either. I didn’t have any paperwork showing me the extent of Grace’s needs on which to decide whether I was going to keep being her mom or not. I also didn’t know that Jack was going to have significant ADHD and I’d have to home educate him. I also didn’t know that Elijah was going to be a deep and philosophical teenager who wakes me up in the middle of the night to discuss his very existence and the expanse of the universe.

Parenting is inconvenient and unpredictable. PERIOD.

This anger I feel. It’s a mask for something else. Anger is a secondary emotion caused by primary emotions unexpressed.

As ugly as it is to admit and say out loud, is the chance this anger I feel isn’t, maybe masking something else like…jealousy? Am I jealous that these parents get to stay in their pretty, sunny, corporately sponsored life in their $700,000 house with their perfectly un-disabled children because they had the luxury of being able to discover their son’s special needs and say “Never mind. Take this one back.” And I don’t have the luxury of curating my life to cut out the inconveniences and unpredictability of parenting?

It’s true. I think I’m angry because deep down, I’m jealous.

But you know what I’m not? Shallow. Vapid. Unchallenged.

All the things the Stauffers appear to be.

But I used to be.

You know what changed that?

Grace. A child we chose to bring into our family without knowing she was disabled.

The most important event on the Rett syndrome calendar

Many believe only Rett families can lead the effort in fundraising. One person said to me “Rett is too rare. No one else will do this.” 

The disease ALS (1 in 50k births) is FIVE TIMES more rare than Rett (1 in 10k births) and donations to the ALS Association went up by $20m a year after a viral awareness campaign we all know as the ice bucket challenge. 

Recently, a major Rett charity made the statement that they are “not fans” of awareness month and you can follow ? THIS LINK ? for the most convincing data you will ever need for why awareness month is the most important month on the Rett syndrome calendar. 

It’s what we in marketing would call a tent pole event.

Charities: STOP RAISING MONEY FROM RETT FAMILIES

Note: I started writing this post nearly 6 years ago. I revised, revised, revised for all these years. I almost posted it so many times and stopped myself. I continually ask myself “what is the end-game here? What is my goal?” and I understand how emotionally charged this topic can be.

Possibly better than most because I was a co-founder of a charity myself. I KNOW the fallout that can be caused when groups are segregated by the charities they support in an us-vs-them dynamic.

I encourage all participants in reading this post to read all the way to the end with an open heart.

So…what caused me to choose to post this NOW? Well…I received an email from a long time reader. He pasted the contents of an email he had received from a Rett parent who appears to be raising funds for a charity. Amongst the many lines which concerned me were phrases like: “It appears that 2019 will be the turning point after succeeding time after time to completely cure animals in lab conditions.” and “we are waiting for FDA approval to begin clinical trials in Rett syndrome girls, aiming to achieve complete cure. The expected approval is due to be granted in the first quarter of 2019.”

You will read below the many reasons why emails like this are so scary to me, ESPECIALLY the reference to animals in labs being cured. And especially ESPECIALLY since there are already FDA-approved clinical trials and this is not a new phenomenon.

Another reason I chose to post this now is that I spotted a leading charity explicitly campaigning to find a Rett family to spearhead an event to “speed the research”. This was positioned with a “now is the time” urgency. Rett families hardly have the energy to spearhead dinner time let alone the launch of a city-wide event. The lack of shame of lazy charities to solicit families (the population THE CHARITY SHOULD BE SUPPORTING) for support has reached a new low and I am not standing for it any longer.

So, without further ado…I give you the post 6 years in the making…

_________________________________________

Pop quiz: Let’s say you’re raising money for starving people in a developing nation. Or the homeless. Or refugees. Or victims of terror. Should you:

a. Get your money from those people

b. Get it somewhere else

Someone sent me a newspaper article about a little Rett girl here in America and her medical needs in relation to proposed Medicaid cuts. It scared me because at the time, Grace was also a Medicaid recipient.

But another thing that scares me is toward the end of that article talking about the desperate state of the little girl is the following: “(dad) works on the side as a Realtor, selling about seven houses a year. He donates half of every commission to Rett research.” That’s tens of thousands of dollars a year given to Rett charity. By a Rett parent. The very person that charity could be supporting.

Listen, charities shouldn’t be propped up by the population they are supposed to be servicing.

Homeless people don’t fund homeless charities. To ask this would just be inept. And lazy. And not at all intelligent or resourceful.

I don’t fault the families who raise funds or give their own money to the charities. I fault the charities who spread little soundbites and PR spin and call it “hope” and whip the community into a “cure is coming!” frenzy and get families pumping in money like they’re buying a cure. So here’s a soundbite: that famous mouse who was “cured” of Rett syndrome was genetically modified at its creation in a lab to be a mouse whose genes could be reversed. That mouse’s disease was modified with an off switch. At a gala event, I heard Professor Bird (whose lab did that experiment) say that this is not a sign of a magic bullet cure and that he’s not the Rett syndrome savior and that this doesn’t automatically connect the dots to a cure. Why? Because our girls weren’t created in a lab like that mouse. Their genes don’t have a convenient off switch. And why did he say that? Perhaps he was aware, at that gala fundraising event, that the buzz in the room was that you should give us your money because what happened to that mouse can happen for your daughter “if only we had the money to pay for it”. I was once told by a charity executive director in the UK that, “we could literally cure Rett with like…eleven million dollars.” Having been intimately acquainted with Rett charity leaders and the Rett community globally, I know one thing for certain: parents have been led to believe Rett can be cured if we throw enough money at it. And if this is true, then by all means, throw money. But you know who has more money than Rett parents? Starbucks. Or any other corporate in America.

When we were running Cure Rett, we came very close to getting our money pots on counters in Starbucks in the UK. Additionally, the flagship stores were going to run a happy hour and donate from every drink sold and this would have equated to hundreds of thousands of pounds. We failed to secure this gig at the last couple hurdles, but we were just a rag tag team of four tired parents (and one god parent) fumbling through the start up of a scrappy grassroots thing. If we can do it, so can long-time established charities who are currently relying on parents for support. If charities put the energy into getting to know how corporates, foundations, grants and private funds work, they can be 100% funded by them.

When Grace was diagnosed 8 years ago, I was told by that same charity executive director in the UK, “don’t fuss with that eye gaze stuff. There’s gonna be a cure in 5 years. When are you doing your first fundraiser?” How about never.

I put money into caring for my kid who HAS RETT SYNDROME.

Go tap up SMEs, corporates, fortune 500’s and blue chips and get the money to turn around and support our community. Educate parents about how to raise funds for their own daughters. Do fundraising bootcamps. Not for the charity in the name of their daughter but actually for their daughter. For things like eye gaze. Or even just taking her to Disney.

When I was part of leading Cure Rett, one of our executives was advised by the director of a leading charity in the USA: “You have to get them (Rett families) at diagnosis. That’s when they’re the most desperate and motivated to do something. That’s when their families feel helpless and want to help. So when they say ‘what can we do?’ then they can direct them to raise funds for us.”

When people ask what they can do, I tell them: they can babysit, they can help us pay for a wheelchair we can’t afford. These are the things I save my big asks for.

Here’s what no one tells you about fundraising…

Your first raise is your biggest.

After that, your circle gets tapped out. They get “charity fatigue”. In fact, the whole world is suffering from charity fatigue. So here’s the best tip you’ll ever get on Rett syndrome fundraising: make sure your first raise is for your own daughter. Her needs will increase as she gets older. There will be certain pieces of equipment you won’t be able to access without moolah. The charity director I quoted above is right: your family will feel helpless in the beginning and want to help. And make sure they help your daughter first, not a charity.

I once ran into a Rett family at a comedy show (Michael McIntyre…I won tickets in a silent auction at a Rett event…the only money I’ve ever given…because some rich guy said, “my girlfriend wants those tickets. You will NOT get them”. Game on, rich guy.) They were pretty fresh to the diagnosis. The mom, who had never met me before, said, “How can you even believe in God now?!” and all I could think was babe, you’re grieving so hard right now. And when I talked about eye gaze, the dad (whose high powered connections were currently being exploited by the first Rett charity to pounce on him post-diagnosis) looked a bit glazed over, “but…the cure…we don’t need eye gaze. The cure…” Yes, my friend…I know…the cure. The Cure. *sigh

Now, I can hear you saying (and it makes sense): No one’s holding a gun to their heads. No one is being coerced to write checks. No, but coming as a former insider, I can honestly say that these families have been targeted. Read the above quote again:

You have to get them at diagnosis.”

When a new family comes into the community, the sentiment has been “let’s get them – quick – before so-and-so does.” At Cure Rett, we wanted to “get them” so we could offer them family support and photo sessions and awareness collateral and free services and prevent them from being exploited so early. From being pushed into raising money while they are vulnerable. Yes, some families raised money for us. In hindsight, I wish we had literally rejected it and given them permission to feel ok about spending money on their kids. I wish I hadn’t been so silent about the fact this was what I, myself, was doing. I wish I had modelled the behaviour for others. I wish we had given ourselves time to grow healthily into the charity we believed the community needed: a charity who was 100% funded by outside forces. I wish so much. (my heart still hurts over the loss of that sweet little charity).

Here’s a bombshell: charities aren’t the saviours of the Rett world. When I was new to this scene, I was told that there were “no public funds being put into MECP2 research”. That no governments or drug companies were working on this. This is an outright lie. Here’s why:

  1. I had a friend working for big pharma and she sent me internal documents on their Rett research. Naughty, I know…I had no idea she was going to do this but I was like “hey, presto! It’s a lie!”
  2. If you look at the scientific papers published about studies, there’s teeeeeny tiny print at the bottom citing where the funding comes from. They are in the order in which they funded: largest donors at the beginning, lesser ones towards the end. At the beginning are bodies like the NIH (US government) or Wellcome Trust (UK). At the end are the Rett charities.

I know #2 will ruffle some feathers. But c’mon…have you SEEN those numbers? How much the NIH is putting into this? Look at any given study and read the small print about who funded it. There are “heroes” in the Rett world who are supposedly funding all this, but quite simply when you look at the numbers, their efforts are a droplets in the sea. Valuable? Yes! And noble and important and powerful. But depriving your daughter of her needs to raise funds? No.

Charities need to learn to stop depending on Rett families, get off their keisters and start getting money from outside the Rett community. Not from me and you and the family who will get their diagnosis next month. But from the other millions of people who have nothing to do with Rett syndrome and have money to give away.

Because there are people dying and leaving all their money to cat charities.

If you want to raise money for a charity, no one (not even an irritated big talker like me) should stop you. You’re a grown up and can make up your own mind. But whatever you do, don’t feel like your daughter’s life depends on it and for the love of Pete…don’t ask for money from inside the Rett community. And remember: your first raise is going to be your biggest so do that one for your own daughter.

So what’s the solution? Raising lots and lots of money for Rett charities to fund lots and lots of science. And even to pay their employees really really well so they can focus all of their energies on raising more and more money for lots and lots of science.

But for God’s sake, please stop soliciting these funds from the population you’re supposed to be supporting.

It’s important to say that while all Rett charities actively seek funding from inside the community, some charities have gotten smart and sell merch and run education summits and family support events. While I do have some hot anger directed at certain individuals who single-mindedly exploit our population, there are charities who have been pillars of the community for decades – funding long term, sensible and valuable science.

Rett families, spend your money on your girls without shame.

*end rant*

RECENT POSTS

READ MORE