On March 24, 2007 we headed to the hospital excited to meet our second daughter. We had no idea of the journey we were about to begin. It had been a perfect pregnancy with no warning signs. All tests had been negative and the ultrasounds were perfect. When Maya was born she did not cry and she had no interest in nursing. She was extremely floppy, moved very little and did not want to wake up. She was admitted to the NICU less than 24 hours later. Because she had none of the typical newborn reflexes, including sucking, she remained there for 12 days being tube fed until she was taught how to suck. She slept 23 of the 24 hours which made feedings more of a challenge. It would take her 45 minutes to complete a 2 oz bottle. Every test possible was run and finally after 3 weeks we had a diagnosis, Prader-Willi Syndrome.
Prader-Willi syndrome (PWS) is a rare genetic disorder affecting the 15th chromosome and occurs in approximately one out of every 15,000 births. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Children with PWS typically have learning disabilities. Behavioral problems are common, most stemming from anxiety, including temper outbursts, stubbornness, and compulsive behavior such as picking at the skin. Many affected individuals also have sleep abnormalities.
Maya is now in Kindergarten and has been part of Personal Ponies program for the past two years. We have seen so many changes since she started her weekly visits with Sugar, Cookie and the rest of the crew (especially you Kiss Me!) She talks about them constantly and has even created a “pony book” to share with her friends, which includes every picture we have taken of her precious ponies. Maya deals with constant anxiety. Starting Kindergarten this year has been a huge change with many challenges. She sees her ponies right after school on Fridays. She arrives exhausted, with clenched fists and a ball of anxiety. She leaves calm, relaxed and happy. It is amazing what 30 minutes with these beautiful creatures can do for her! This year she has begun taking on some new responsibilities with the ponies. She is walking them on her own and loves to help feed them and clean their stalls. After a long week of having everyone take care of her, she loves that she can be independent and take care of them!