I have had many struggles in my life. My
youngest daughter, Destiny, born with Non Ketotic Hyperglycinemia (NKH), being
one of them. Let’s start at the beginning. I got married at the young
age of 16. I had a terrible marriage to a man that was controlling, mean,
manipulative, a crook, and at times abusive. I, however, was in love with him,
and didn’t want to leave. We had 3 children together, Brittney (now 13),
Jonathan (now 11), and Destiny (now 8). Our youngest, Destiny, is the only one
affected by NKH. I was married for 12 yrs before we finally got divorced, and
he is no longer in our lives. It’s been 3 years and our lives are better now
than they have ever been. I am engaged to a good man now who treats my kids as
his own. He has a daughter that is the same age as my son and he had a daughter
that passed away. She had Spina Bifida. So he shares
and understands the day-to-day struggles I have with Destiny, as well as my
other 2 kids.
Now for Destiny’s story, which is much the
same as the other NKH kids’.
Destiny was born on May 4, 1999.
Shortly after her birth, she wasn’t waking up, never cried, her breathing was
shallow, she wasn’t eating, etc. Finally, one nurse decided something didn’t
seem right, and she called in the doctors. They ran several tests, but after
finding no reason for these symptoms, they sent her to the local Children’s
hospital. More tests were ran and nothing found, until
Destiny’s Neurologist, Dr. Vinay Puri,
was called in. He read through her charts and examined her and gave a bedside
diagnosis of NKH, and ordered she be tested for it. It was confirmed 3 days
later. By this time she was 5 days old. Nobody had
ever heard of this before. She was immediately started on the normal NKH
medicines. At 13 days old, she got a g-tube placed and she woke up for the
first time since she was born! She was sent home at 22 days old on Hospice “to
die at home”. We were told at this time that no children with NKH live beyond 5
years old, and that’s even extreme. At 6 months old, right before Christmas,
she contracted RSV, a respiratory virus, and had to be put on a ventilator. She
spent her first Christmas and her first New Year’s in the hospital. Again, she
made it through. By the time she was a year old, she was
doing too well for Hospice and was taken off their program. That’s when I had a
friend help me find support. She had a daughter with a rare disorder also. She
helped me find the NKH International Family Network. I called the president at
that time of the NKH International Family Network. She told me her daughter was
15 and doing well, and got me connected through the Network with the website
and newsletter. Most of my information and support came through that site. Now,
7 years later, Destiny is doing well, and I try to do all I can to help others,
and spread the word about NKH. I love it when people ask me what’s wrong with
my daughter because then I can tell them all about NKH. That’s why I
volunteered to be on the board of Hope for NKH. I want to help spread the word.
I hope that we can make a difference and get others the support and the relief
I felt when I found the Network. I hope we , through
Hope for NKH, can give future NKH diagnosed kids’ families hope and support.