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Meet Jared!
PPL Theme Child 2003

 

We at PERSONAL PONIES are repeatedly amazed at the courage of the children with whom we place our ponies, but we have been especially touched by Jared Wulfekuhle's charm and determination. He is an inspiration to all who know him and we are delighted that his family has agreed to represent PPL in activities in their community and to serve as our Theme Child for 2003.

This is Jared's story as told by his Mother, Melissa Wulfekuhle, in Holy Cross, IA.

On July 20, 1999, my husband and I welcomed into our lives, or so we thought, a healthy baby boy. It didn't take us long to figure out that was not the case. Our son, Jared was referred from one pediatrician to another to another for days. No one had any answers. Jared did not have the suck reflex, he had acquired microcephaly (small head), unusual physical features, 2-3 syndactyly (conjoining of second and third toes on both feet), and hypotonia (low muscle tone). After three days of testing and inconclusive results the hospital sent us on our way! Who would have ever thought where this journey would take us!

After going home and struggling for weeks to get our son to eat we finally went to see my uncle, Dr. Burbach, a chiropractor near our home. His advice saved our son's life. Jared had gone for weeks, barely eating enough to stay alive. Dr. B. said "common sense tell us that a baby needs fat their first year and we need to get that into him any way we can. We need whatever we can get into Jared to be fat and calorie packed." So from then on we started feeding Jared with a spoon and he ate things like Yo Baby a higher fat yogurt, baby food mixed with butter and sour cream, fresh goats milk and puddings made with eggs and cream. Our medical doctors, at that time, did not agree with what we were doing, but we saw no other way.

We continued on with this diet and were fortunate enough to come across a doctor that agreed with our diet for Jared and also suggested we do more testing to see what was causing Jared to be so small and delayed. After 8 ½ months of unknown, Jared finally had a diagnosis. Smith-Lemli-Opitz. A very rare genetic disorder that deprives Jared of normal levels of cholesterol, that in turn, prevents normal growth and development. All that advice of high fat, high calorie, well guess what, it was high cholesterol too! Exactly what Jared needed and exactly what kept Jared alive! Jared is, now, in a study at the National Institute of Health in Bethesda, MD. We travel there once a year for tests and information on the syndrome. The doctor there is amazed at the advice we received and has said many times that Jared is doing as well as he is because of that wonderful advice.

Things have become easier these days. Jared is still very much delayed and probably always will be. He takes a cholesterol supplement three times daily, he requires speech and physical therapy weekly, hearing aids for hearing and braces and a walker for walking. Jared just started walking with the walker and is really on the move! Something they said he probably would never do. I love it when he proves the doctors wrong . He is also going to school, has a puppy, enjoys aqua and hippotherapy and will soon enjoy his own pony!

We came across Personal Ponies by accident. My husband and I were searching for different breeds of dogs recommended for children with special needs and came across the Personal Ponies web site. We were both so excited we called our State Director immediately and got in contact with Marianne as well. Things really got moving when Cathy Cline, our State Director got in the picture. She has gotten ponies in Iowa in only a few months. We have visited with Cathy and the ponies and are just in love! Jared has been carrying a picture of his pony around for days! Jared cannot speak yet, but he holds the photo up and says "uhuhuh" to show everyone!

Jared and his pony, Lilly are together now and are best pals. Jared enjoys doing his chores with his dad. The two "men" head out every evening together, Jared with a plastic bowl in hand filled with treats for Lilly. Usually an apple or carrot. Jared finds it quite amusing watching Lilly eat and then Lilly usually nuzzles up to Jared and drools on him. It is so cute and Jared doesn't mind at all. Jared has just recently started walking independently, No more walker, yet again proving the doctors wrong. Anyway he loves to take the very end of the lead while mom or dad holds the lead closer to Lilly's face, and walk around. He really thinks he is leading her all by himself, and he is so PROUD! Jared also likes to brush Lilly, especially now while she is shedding her winter coat. He loves to see the hair fly away in the wind when he shakes the brush. He just laughs and makes everyone around him laugh too! We do believe Miss Lilly truly has wings! She is an angel, as is Jared! They are quite a pair. A special little pony for a special little boy!! This is such a wonderful program and we are so excited to be a part of it and look forward to sharing our experiences with others.