This is my niece Madison.
I started this site because I was inspired by families who shared their stories on the Angelman Syndrome Foundation Facebook page. Right now I’m struggling to find the words to describe Madison because I fear that I cannot do her justice. In all honesty, I want to give her a voice because she cannot speak for herself. I want the world to know just how truly amazing this little girl is.
Maddie was born on March 2, 2010.Her first few months were that of any baby, except she was way more loving and beautiful(biased opinion, yes I know). Her mother, Annie, became increasingly concerned that Madison was five months old and she wasn’t achieving basic milestones such as sitting, babbling, rolling over, or holding her bottle. She took Madison to the doctor and he ran a few blood tests that didn’t find anything wrong. Eventually he advised my sister to take Madison to a neurologist.
The neurologist suspected Madison had Angelman Syndrome because she exhibited the basic characteristics. When my sister explained this to me, I was beyond confused. I did what most people did: I googled it and what I read broke my heart. The possibility of Maddie never being able to speak or walk was like a kick in the face. I wanted her to be “normal.” I wanted her to be a rascal, to be able to run and laugh with her sisters Emmalee and Rhianna. I wanted to watch her take her first steps, to teach her to say my name and how to ride a bike. I wanted her to have what every child was entitled to have.
Madison’s blood was drawn and tested. She was officially diagnosed with Angelman Syndrome and Hypotonia(weak muscle tone)when she was ten months old.
My family didn’t seem to take the news well, but we accepted it. I’m proud of my sister for putting her grief aside and for focusing on Madison’s well-being. Unfortunately, Madison began to have seizures shortly after celebrating her first birthday. She was placed on medication that helped lessen the seizures, but they never completely stopped. At the time, Madison was not eating any food, sitting, or babbling, but we never gave up hope.
Madison began weekly developmental therapy sessions and she made significant progress in a short amount of time. Maddie was even attempting to eat solid more often. The day she ate macaroni and cheese was a miracle to us. I remember my sister Annie telling me about it and how it made her want to cry. The day I saw Maddie eat a cupcake gave me hope. I feel silly saying that, but it did.
Eventually Madison learned to sit up by herself:
And to stand up:
Madison is now two years old. She isn’t walking yet, but she has gotten much stronger. In the past few months, Maddie has been waned off of baby formula and is now eating full meals. She babbles quite often, and she expresses a wide range of emotions. Madison loves to watch Sesame Street, to eat pasta, and to play with her big sisters.
Madison is love.
I want to document and share Madison’s progress here as well as inspire other families with angels in their lives. Always try to remember that Angelman Syndrome isn’t the end of the world. It isn’t your fault that your son or daughter has it, and don’t ever think that they are less than amazing just because they’re missing a part of a chromosome. Yes there will be hard days that will grieve your heart, but for every one of those days there will be a hundred that make you thank God for your child. Madison is my heart. I wouldn’t trade her for the world.
Still, I cannot wait for the day when I see her running around, screaming, and raising hell with her sisters just so I can yell “YOU GUYS BETTER KNOCK IT OFF OR I’M GONNA PUNISH ALL THREE OF YOU!” Until then, I will continue to shower her with sock monkeys and love.
This whole page is awesome. I wish the best for your niece.
Hi there! This is beautiful… It’s so lovely to see you giving support and love to the Angel in your life and all of her family. My older brother’s an Angel (well, we think he is anyway; he’s never been officially diagnosed), and I know from personal experience that having a strong family base can make the most difference in the world. Good job on raising awareness of the syndrome as well! The more people who know about it, perhaps there will one day be a cure, or at least an improvement in methods to combat it 🙂
Give a smile to your Angel from my Angel 🙂
Thank you for the kind words. I appreciate it!
Beautiful story for a beautiful girl! Angelman Syndrome is close to our hearts too. David’s oldest brother (he is 38 this year) has Angelman Syndrome. Reading your story of Madison’s early days reminds David so much of what mum and dad retells us that Ben went through… even down to the seizure episodes.
We are in fact walking in September the Camino (800km) and raising awareness for Angelman Syndrome! You are right, let’s be their voices! They truly are angels with their happy faces and loving hearts!
Look forward to reading more of her progress.
David and Le