Kaitlin is a beautiful 23 year old girl from Manalapan who is in Stage 4 of a disease called Rett Syndrome. Rett Syndrome is a neurological disorder that predominantly affects girls. It has been described as cerebral palsy, Parkinson’s, epilepsy and autism mixed together. It attacks the vital organs and slowly shuts them down. Girls affected by this disease are mentally disabled, most don’t walk or talk and they slowly lose control of their hand movements. I had Kaitie a year after I graduated from high school. In essence, we grew up together. The past 23 years have been a long road with many tears and heart break. Hundreds of doctor appointments and meetings. Interviews with nurses and fighting with insurance companies. But, one of the hardest things to push through has been mourning the life of a child that is still alive. Coming to terms with the fact that Kaitie will never have a best friend, a husband or children of her own, never drive a car with the music blasting, walk along a beach in the summer or know what it’s like to be part of a team - among many many other experiences, this realization was/is gut wrenching. Although this disease has taken a toll on Kaitie and her body, she is a superstar. She has been through so much but still manages to laugh and smile. She is a blessing in my life and has taught me so much about what is really important. I don’t know what I would do without her. Kaitie was diagnosed with Rett Syndrome at the age of 4. Before the diagnosis she was labeled as Hypotonic (low muscle tone) and developmentally delayed. We began to see an issue around her 6 month wellness checkup. She was not hitting any milestones and couldn't even hold up her head on her own. The doctor suggested some small exercises to do and we crossed our fingers that at 9 months, we would see an improvement. We never did. That’s when an onslaught of testing began and life changed....again. There is no cure for Rett Syndrome. There is no treatment and no magic pill. Kaitie is almost 24 years old and spends most of her day in a hospital bed at home. She has a feeding tube in her stomach for medication and another tube in her small intestine where she is administered food through a pump. She cannot handle food in her stomach. She is on a laundry list of medications. She has nothing by mouth because she will aspirate. She has scoliosis and cyphosis. Has seizures, poor circulation, low blood pressure, receives oxygen many times throughout the day, doesn't walk or talk, stops breathing at random times, suffers from depression and is completely dependent on others for all aspects of care. Rett girls usually succumb to the effects of this disease by either passing in their sleep or because of a bout of pneumonia. Kaitie was given a life expectancy of 7 or 8 years of age but here she is coming up on her 24th birthday. Like I said, she is a superstar, we are proud to be her parents. I hope that years from now when we meet again in heaven, she WALKS up to me and SAYS "Thanks, mom. You did a good job."
Kate’s wish is for a shower in the homes downstairs bathroom, so her parents can stop bringing her up and down the stairs, as this makes her more independent.***Please donate Home Depot gift Cards. We need an electrician, plumber and contractor to help with tiles, and shower completion.
Graysen is an 11 year old cancer survivor. Graysen was diagnosed with rhabdomyosarcoma when she was 6 years old. She underwent 24 weeks of chemotherapy and 6 weeks of proton radiation therapy. In 2013, Graysen endured cataract surgery and lens transplant surgery in her right eye.
Currently, Graysen’s vision fluctuates multiple times throughout the course of a year causing multiple pairs of glasses and lenses to be purchased.
Graysen has undergone ptosis surgery three times to raise her eyelid. Radiation caused Graysen to have the muscle function of around an 80 year old which caused her right eyelid to droop. Also from radiation damage, Graysen’s orbital globe on the right side has recessed. When she reaches a more mature age, Graysen will need facial reconstruction surgery.
Graysen’s multiple surgeries have taken a toll on her physically, emotionally, socially, and intellectually from the thought of knowing multiple therapies, future surgeries and treatments will be necessary. Graysen suffers from crippling anxiety, depression, Post-Traumatic Stress Disorder, and Obsessive Compulsive Disorder over germs. At times, Graysen will become so anxious and obsessive that she will become physically ill.
The costs of medical bills, therapies, co-pays, and prescriptions are exorbitant and overwhelming. Doctors and hospitals have no problem placing a price tag on your child's life.
Graysen wish’s for her for a playroom room remodel. A new Floor, couch & Paint
***Please donate-Home Depot gift cards, Bobs Furniture gift cards. Donation from a painter to painttheplay room. Donation to install flooring.