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.
11630 W.
Brady Rd.
Chesaning,
MI 48616
Thank you so much for your help in continuing
research of heartbreaking disorder.
Sincerely,
Treasurer, Hope for NKH
PS. If you are unable to donate
auction items would you please consider a monetary donation instead?