June 21, 1998 brought forth to our family a very blond, very fair, very bouncy baby boy. Just after Christopher Jon Demeritt breathed his first breath, he was laid across my chest so that we could begin the intimate bonding process. I was exhausted from labor but anxious to gaze at this little being who had blossomed in my womb. He squirmed all over me exhibiting amazing strength for a newborn.

It's been 15 months since Christopher's birth and he is still squiggling. Christopher was a challenging baby from the moment he was born. He turned purple 3 times the same day he was born, apparently choking on mucous. Breast feeding, that special, intimate time that should soothe and satisfy a hungry baby, turned out to be a difficult, frustrating task. I gave up at ten weeks even though I had successfully nursed my other 3 children. I couldn't understand what was wrong or where he got the incredible energy to continually wiggle during his erratic waking hours. Unusually intense colic, I thought. I counted the days until he was four months old when colic is suppose to decrease and eventually cease, like it had with my first son. I hoped the constant spitting up would get better, too. At six months, when he was till cranky and difficult, I decided that soon he would be sitting up and crawling. Surely that would make him happier….

At Christopher's ten month check-up, he hadn't yet reached those milestones. He wouldn't even use his arms for support, when lying on his stomach (a position he still dislikes.) Our pediatrician recommended a developmental evaluation and physical therapy. Before we had a chance to pursue it, Christopher had his first seizure episode. He had 12 seizures in 12 hours. He had an EEG and an MRI (brain tests) but they were inconclusive. Christopher began antiseizure medication and we went home anxious for the neurologist appointment scheduled that week.

Dr. Edward Emery examined Christopher, reviewed his test results, and asked us about his behavior. He felt we should test him for Angelman Syndrome; a genetic disorder. He didn't tell us what Angelman Syndrome was until we knew whether he had it. DNA test results would take 4 weeks. I don't remember feeling particularly upset when we left.

A few days later at 2am; up with Christopher because of his erratic sleep habits, I decided to punch up "Angelman" into the internet search. Up popped websites and I jumped in looking for a description and traits. When I found them a serious slump overtook my body. The traits- so many- looked like a description of my baby!

Angelman Syndrome (AS) is a genetic disorder in which 80% of affected individuals have a very small deletion of a bit of chromosome #15. (The other 20% don't have deletions but the way they have it is too detailed to describe here.) The occurrence of AS is predominantly spontaneous. Inheritance can occur but is rare. Common traits are unstable, jerky movements; hyperactivity; developmental delay; lack of speech (or perhaps 1-4 words); receptive skills higher than expressive communication; unusually happy demeanor with bouts of excessive laughter; small head size; seizure disorder; light skin, hair, and eye colors compared to family (60%); chewing behaviors; excessive drooling; sleep problems; flattened back of head; and protruding tongue. Testing showed severe mental retardation (parents disagree with these results: their opinions range from mild to profound retardation.) Life long dependency was also noted.

Knowing that my son was being tested for such a severe disorder broke my heart. I knew the next 4 weeks would be the longest of my life. I staked all my hope on traits he didn't possess-- but soon Christopher even began to protrude his tongue when he was tired.

On May 30th, 4 weeks to the day, we learned that Christopher is an "Angel." Although my husband and the grandparents broke down, I felt a sense of relief. Now I could learn about my baby, now I knew why, and I began my endless hunt for information. I can't remember who connected me with Parent to Parent and Family Infant and Toddler Project (FITP), but I am eternally grateful.

Parent to Parent's Jo Yoder connected me with another 'angel family' in Vermont. We were able to meet them and their 15 year old daughter who has AS. AS is fairly uncommon, only about 1,000 diagnosed cases in the U.S. and Canada. The family was supportive and willingly answered our endless questions. Seeing their family living successfully gave us hope and inspiration.

An appointment with FITP brought Carol Lowe Clay, a community resource parent and Beth Wilkins, an early educator to my home. Carol asked "What do you want for Christopher?" Then she helped me understand all the choices that are out there and assured me that FITP can help us get some of them. I want happiness and security for my son. I want him to reach his highest comfortable potential within a strong family unit.

Carol has truly held my hand during this difficult time. She calls me frequently with information on things like support, therapy, respite, play groups, and funds. She always asks me how I am doing. She also has made several phone calls for me, leaving me extra time to deal with my demanding family life and special baby.

Beth will be coming to my home next week to begin early intervention with Christopher, preparing him to enter into school hopefully as smoothly as possible.

Because of these people, my family and I were able to attend a bi-annual conference on AS in Philadelphia during August. We saw over 70 'Angels' with their families. The support and education was invaluable. Parent to Parent, Howard Human Services, and the VT Disabilities Council provided funding. Thank you to Carol for directing me to these sources, as well as Martha Haskell, a social worker at the Developmental Clinic in Burlington, who informed me about the conference.

Parent to Parent and Family Infant and Toddler Project are an incredible support network in a world of confusion. I know I am not alone. I am so grateful that they exist and I hope to become a giver as well as I have been a receiver. Thank You...