I’ve spent the last two months, more or less, full time working as the Auction chair for this event. It is the largest fundraiser in the world for Rett Syndrome research and we are very proud to be such a big part of it.
The auction site went live this week and I encourage you to take a look at the fruits of your labor – just click on the picture below. You can purchase items on the site until Thursday. I’m proud of the auction we put together and can’t thank all of you enough for your support, whether financial, through donations for the auction, or through emotional support.
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for the rest of their lives. And for that kind of support, a whole team is necessary.
When we were first diagnosed, doctors told us “If she doesn’t use it she will lose it”. If she doesn’t use her hands she will lose the ability to lose her hands. If she doesn’t walk she will lose the ability to walk. So we assembled a team that would help her fight.
In the spirit of the baseball playoffs – here’s her starting lineup. These are the people we see regularly to make sure Maggie’s health doesn’t decline. These are the people we depend on every week. When something is wrong, these are the people who help us problem solve. Only two of them had significant experience with Rett before they met us. Now, they are all experts.
Daniella – Physical Therapist – 2 hours/week
Uyen – Occupational Therapist – 2 hours/week
Deandra – Speech Therapist – 2 hours/week
Jeff – Neurologist – 2 days/year
Barbara/Melvin – Vision Therapist – 1 day/year
Susan – Communication expert – 2 days/year
David – Cardiologist – 1 day/year
Shelly – Caregiver – 3 days/week
Karen/Judith – Horse Therapist – 1 hour/week
Joanne/Heather and her Pre-K team – 5 days/week
Alyse – Swim Instructor/Behavioral Therapist – 1 day/week
Peter – Pediatrician – 1-5 times/year
Nancy – Orthotist – 2-3 times/year
Rob – Naturopath – 1 time/year
Kim, Tina, Lyn Dee and her IEP team – 2 times/year
It’s sad that any kid needs a pediatric neurologist. And sad when kids need pediatric cardiologists. Maggie needs both of those and a team of 13 more. Those are just two people on this one little girl’s team!
Look, I recognize this team is a little absurd in its magnitude. But each and every one of them is necessary. And if we stopped going to see one, we would see the negative impact quickly. In fact, there are still more interventions we’d like to do, but the time to do that simply does not exist.
So instead, we’ll cheer on the team. But we’re not cheering them on from the sidelines at all. We’re in the huddle, drawing up plays. After all, this is not an individual sport. It’s a group effort.
And now that includes each and every single one of you.
This is the email I sent to all of the team above the night that we got diagnosis, but I realize that you’re also part of her team, so I wanted to share it with you as well.
I know that we just got some brutal news about Maggie, and I wanted to write to say thank you for all the help and love you guys have shown her.
This isn’t easy. But it isn’t over. There are miracles that happen every day. We just have to be one of them. With your continued support, I believe we can be. Jenny put it best when she said “life can change in an instant. It’s what you do with that change”. And we’re going to do absolutely everything we possibly can with this change.
When I look at her
I don’t see her arms flapping.
I see a little girl trying to fly.
When I look at her
I don’t see a girl struggling to breathe
I see a girl who takes my breath away
When I look at her
I don’t see a girl who walks with a hitch
I see a girl who walks with a skip.
When I look at her
I don’t see a severe disability.
I see a little girl.
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year.
Maggie has lost her speech.
Maggie’s arms & hands have Parkinson’s like tremors.
Maggie hasn’t lost all hand function, but she has lost enough.
Maggie’s right hand constantly wrings so she wears a glove to protect herself.
Maggie’s left arm constantly hits her face, so we brace it to protect her.
Maggie has had a few Rett Episodes, which are similar to seizures but not seizures.
Maggie has GI issues.
Maggie’s body temperature has a hard time regulating.
Prone to respiratory infections.
Visual sensory processing disorder
Sensory processing disorder, proprioceptive and vestibular.
Maggie has Global apraxia, which is difficulty with motor planning. Motor planning incorporates every motor skill. Walking, climbing, eating, playing,etc.
Maggie can still walk, run, jump, follow directions, smile, laugh, play, swim, climb and eat by mouth.
Everyday she works hard to keep the skills she hasn’t lost and to regain those that she has.
And Maggie is considered mild for Rett
This past year, Rett did progress. Maggie lost more hand function, we are a moment away from full loss of function. Maggie now drools more often and has tongue thrusting. She now has more anxiety. She has breathing problems, holding her breath for short periods of time and hyperventilating with regularity. Maggie has also had several seizures, right now they correlate to when she is sick. Her right arm is also very stiff – which may be the beginnings of dystonia…tbd
This is Maggie’s Rett and what she deals with everyday. These are other symptoms typical of Rett that Maggie does not yet have. But as it progresses, we may have to deal with them as well.
Scoliosis, fragile bones
Impaired Cardiac problems, potentially causing sudden death
Difficulty walking, leading to wheelchair
From the moment we get up to the moment she falls asleep, we help her fight for her skills. Maggie is a fighter! Rett keeps knocking her down, but she gets back up. This is why we fight for her. For a cure.