Hello Mr. _________,
I am a big fan and have read all of your books. It has always impressed me how you characterize handicapped people in your books and treat them with respect and dignity.
My name is Mary Hickmott and my son Jonathan has Non-Ketotic Hyperglycinemia (NKH). NKH is a devastating genetic condition that causes progressive brain damage. After trying years to become pregnant my husband and I were ecstatic to finally have the blessing of a child. Our son was born in 2001 at the local hospital and he was so beautiful and everything seemed so perfect… except his cry wasn’t quite right he also had frequent hiccups and slept a lot. We were referred to see a specialist but when we arrived at the appointment the doctor immediately said that something more was wrong with Jonathan and had his nurse take us to the emergency room. We barely made it to the ER when Jonathan stopped breathing. The next thing I know they are running down the hall with my baby to the Trama unit. Jonathan was put on ventilator support and admitted to the Neonatal ICU. After numerous tests and treatments the doctors told us that Jonathan had brain stem damage and would never breathe on his own again. We chose to remove ventilator support and were taken to a room to be alone with our son. But he started breathing on his own then we received a knock on the door telling us they had a new diagnosis for us Non-Ketotic Hyperglycinemia and our journey really began. Jonathan is going to be 6 years old this year even though he is severely impaired and suffers numerous seizures daily he is precious to all that know him and we feel blessed by everyday we have him with us. Unfortunately, most parents loose their children within the first few months.
Hope for NKH is a nonprofit organization established in January 2006 by parents of NKH children our goals are to promote and fund research, increase awareness and offer emotional support to families affected by this disorder. Treatments for NKH are what Jonathans’ doctors call “band-aids” they treat the symptoms but do nothing to treat the actual disorder. Currently there is very little research done on NKH and treatments for NKH due to lack of funds. One doctor only requires $40,000 dollars to maintain his research for one year.
Any autographed books or memorabilia you could donate that we could place in our December 2007 charity auction to help us work toward this goal would be greatly appreciated.
Please mail donations to:
Hope for NKH, 11630 W. Brady Rd., Chesaning, MI 48616
Thank you so much for your help in continuing research of heartbreaking disorder.
Treasurer, Hope for NKH
PS. If you are unable to donate auction items would you please consider a monetary donation instead?