Thank you for visiting my page!
My son, Jaxon, is a 4 year old with Prader-Willi Syndrome. He is one of at least 50 children in Louisiana with PWS. Modern research has a plan for more effective treatments and an eventual cure for PWS. Every step we take leads us closer to the success these children deserve.
Imagine at 3 months old you are given the medical diagnosis of PWS. A complex syndrome affecting every area of your little one's life. Add in the mix that this syndrome only affects 1 in 15-22,000 people so you've never heard of it. Your baby will probably never live a fully independent life, they may need constant supervision so that they don't over eat. Their whole life will need to be controlled and supervised. At three months old, with that diagnosis things looked pretty bleak!
BUT, early diagnosis has been a blessing not a curse. Every day they wake is a blessing, you watch them grow stronger every day. Jaxon is my superbaby! You see their smiles and hear their laughter. You watch as they learn to crawl, feed themselves. And take their first wobbly steps. We know that Jaxon needs extra help to reach physical milestones so we have weekly physio sessions. We know that he needs extra help with speech so we have a speech therapist already on our side. We have an army of professionals on our side, fighting with us against PWS.
Who knows what the future may bring. Who knows what care needs Jaxon will have. No one can fore tell the future, so we live in today, not thinking too far ahead.
We are very excited about the upcoming research for PWS treatment! We really want this study to continue to happen & for that to happen we need your help! I have started this annual fundraiser in my little sweet Jaxon's honor so that his family and friends can help make this happen! Together we can help Jaxon kick PWS's arse!!