Thank you for visiting my fundraising page!

                                                This is Madi's Story

Madison was born on April 12,2008.She was born full term.When Madison was born she couldn't move ,cry or even suck very well. She was literally like a ragdoll in our arms. After numerous doctors  visits they decided to hospitalize her at 10 days old for  what they called a " failure to thrive". They ran every test imaginable on her. All she would do is just sleep..... We would actually wake her  in the middle of the night  to feed her. She was to weak to cry.... I would feed her a bottle,  45 minutes to get her to drink an ounce.  Her muscle tone so poor she could bearly lift her head. We watched every little move she made. We studied her so much we started to finally understand all her little movements and expressions.We now knew.......  she was hungry,needed a change,uncomfortable or just simply wanted attention.She never ever cried! We had this all part of a routine before she was even diagnosed..... 

She was officially diagnosed  with Prader-willi syndrome on June 8 2008. I will never forget the one thing that kept playing over and over in my head  1 in 15,000 children.... Why Madison?. It took a while to get past just that. Why couldn't  this happen on a lottery ticket?.We still had to "understand" what the future was to  hold, never did I imagine hearing the doctor tell me" food was gonna be her biggest threat".

She has recently just turned one years old and getting stronger everyday, we are adjusting to her delays. There is alot of love and patience. We know in our heart she will soon be able to sit up on her own,crawl,walk,talk,run around and chase her sisters. She has managed to roll over on her own,She is getting it..... She is doing it on Madi's time. I know the hardest part is yet to come. Who would ever guess,  A baby with a "failure to thrive"will never again be full. Would we ever think food would be a threat?.  Looking back on her first year there have been so many days of tears, laughter, joy and pain, but everyday there was hope..... some days we would still ask Why? Even the  days we would wake up waiting to still get the call to hear it was a mistake..We even still hope for the call telling us "We found a cure".

Madison is fragile, yet she so strong,  when faced with obstacles she continues to amaze us, she fights to reach her milestones. She is starting  to put meaning behind her actions.  Every time she smiles her cheeks get so full and  her eyes so bright , it just brings tears to our eyes. We have seen her just in this past month go from not holding her head up for even a  minute, to  holding it up long enough  for  her sisters to  put her hair in pig tails because yes, it is long enough to do! She babbles mama and dada,plays peek a boo,claps her hands,She is able to smile at us when she is happy,cry when she is hungry and even yell when she wants to play. A long way from where she was only a few months ago. She loves the attention she gets from her two sisters as much as they love giving it  to her. Madison has a great team behind her the doctors, therapist,specialists and most of all her family.. The love and support is amazing. We are thankful to everyone!!!.She is a special gift given to us.We could not have been more blessed. She makes us realize everyday the true meaning of love. The love a parent has for their children!  How truely blessed we are to have her. I never expected life to take us down this path. Its definately not where we ever imagined we would go.  Now that we are here we will never look back. I will never  again ask why??. Never again question the odds of this happening because it doesn't matter. "It is what it is". I can go on forever.... but at the end of the day when we lay her in her crib to put her to sleep. We thank God for choosing us. He has given us this amazing child who has brought so much joy to our home.  We know in our heart she is going to be ok, She has an Angel watching down protecting her.

"We will always love you Madison."  You are our Angel. Together we will walk with you for a cure.We are so proud to be your Mama and Dada..xoxo

 

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but hope? We have two options, medically and emotionally: Give up, or fight like hell?"

                                                                                     Lance Armtrong

I would like to thank everyone who has made a donation to pws New England. We are excited to walk in the First annual pws walkathon on May 30,2009.

Please.. if you will forward this to anyone you may know who would like to make a small donation to the New England chapter Prader willi . Madison along with all these other children need your help.  I have gotten the opportunity to meet other children  with this syndrome,  they are just amazing,  precious kids...Please support Madison along with all these children on their "fight for a cure".