April 12, 2002 was a wonderful day for my husband, Dean and I. We were welcoming our first child, a little boy into the world. Derek Lawrence Jones was born that night and to us, seemed to be the perfect baby we had waited so long to meet.
At about 5 days old, we were convinced that we had a baby with colic or one of those other "normal" newborn issues. He would only sleep for around 10 minutes at a time and he eventually stopped feeding. We were called by our doctors’ office and told that the newborn screen had come back and would need to be re-tested because there seemed to be a "lab error" showing that Derek had a very rare condition called Maple Syrup Urine Disease (MSUD).
After being re-tested, we were called again on April 24th and were told to take him to Children’s Hospital Medical Center of Akron where he was going to be directly admitted for treatment. Naturally we were in a state of denial and disbelief. After about four hours, we were called and told that Derek was now in a comatose state and needed to be life-flighted to Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Derek was admitted to the NICU at 1:00am on April 25, 2002. This is where we met the doctor who we believe saved our son’s life, Dr. Douglas Kerr.
Dr. Kerr, along with his many wonderful colleagues and Derek’s dietician, Judy McConnell who have become a constant and wonderful part of our lives. Derek is now 3 and a half. He enjoys playing with his younger brother, Adam, who will be 2 on February 1st. Derek just recently started going to Sunday school and will be playing his first year of soccer coming up in the Spring of 2006.
We, as a family are dealing with the everyday questions and concerns of raising a child with MSUD. However, just this past September 22, 2005 we held our first fundraiser to help the search for the cure. We held a reverse raffle and raised $4,650.00. As an extra added bonus we were able to meet Dave and Sandy Bulcher, who were kind enough to drive 2 hours to our town of Barberton, Ohio for our fundraiser.
We plan on continuing to help raise money each year to help improve the quality of Derek’s life and all of those affected by MSUD.
The Jones Family,
Dean, Amy, Derek and Adam
Living Well With MSUD - Derek Lawrence Jones
- Written by The Jones Family
- Category: Volume 23-1