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The millennium year of 2000 was the most difficult year of my life. That year my third child was born. My first two were girls. We were excited to find out we were going to have a boy. However, our joy turned into sorrow. Our only son, Andrew was born with Prader-Willi Syndrome. He was a floppy baby, his cry barely audible. It was a struggle just to keep him awake.

For the first five months he was tube fed. At six months he began to slowly make progress. He could lift his head and roll over. At nine months, he was sleeping 20 to 22 hours a day. At 12 months he sat momentarily, but would then fall back. We were thrilled to start Andrew on Growth Hormone (GH) therapy at four months of age, but for us that wasn’t enough. It was one week past his first birthday when we started Andrew on Co-enzyme Q10 (CoQ10). That morning in September, I squeezed out the CoQ10 on a spoonful of oatmeal and fed it to Andrew. At that age Andrew wasn’t crawling yet, he just rolled. A few hours later, I noticed he was rolling a lot faster. I reported this to my husband who could hardly believe me. I then put Andrew in his Johnny jump-up®. For the first time he jumped and he smiled more then I have ever seen him smile. I put him in his walker which he pushed across the floor albeit backwards, but until that day he never moved it more than an inch. My husband was quick to get on the internet and discovered that because of Andrew’s young age and the fact that he was already on GH immediate results were possible. That evening I gave Andrew his bath for the first time he sat straight up without leaning over the tub. The physical therapist stated that fact he is now sitting up indicates an increase in strength.

That same week all three of Andrew’s therapists, physical, occupational and speech noticed an increase in his awareness. He no longer had the glassy eyed appearance. He was interacting with his environment and with his sisters. He could make eye contact and keep his focus. He cried a little louder and slept a lot less. Progress came more rapidly. He learned to point and to feed himself. Within eight months he went from sitting to walking. At 20 months he can independently walk a short distance. He can go from a sitting position to a stand without holding on. His metabolism has increased to normal. He can say approximately 6 words, although randomly and sign for two more. He climbs up and down stairs. His sleeping pattern and energy levels are both normal. He can scribble with purpose and has never stopped smiling. Andrew’s progress is due in part to his advanced age, early intervention therapy and growth hormone therapy. However, the impact of CoQ10 can not be ignored.

In the past two years, GH was FDA approved and the benefits of CoQ10 are now being explored. I anticipate the next two years to be just as productive in making discoveries and finding treatment to improve the lives of all those with Prader-Willi Syndrome.

Disclaimer:This article is intended for informational purposes only and not intended as medical advice. Please consult your physicians before changing any medical treatment.