|In Memory of Jesse|
|By Andrea Reilly|
left us January 8,1998. He died of a a tear in his esophagus at an artery.He
played right until the end.The doctors said it was very quick.It is not
thought to be related to SOD.Jesse and Andrea have touched all of our lives
and we are greatful to have known Jesse through Andrea.Her contribution
has and will continue to be a asset to our SOD family.Thank you Andrea for
sharing Jesse's life with us. He will remain in all our hearts forever.
Here is speech his father gave at his service followed by his biography:
Jesse was a very special
and gifted boy
I loved the way he
There are so many
things I love about Jesse that I think there would not be enough paper
to write it all down
I salute and honour you for your courage, determination; and trust in us; as you were a true warrior in your battle in life
I will always remember
Jesse by his laughter and his big round beautiful smile.
Jesse is 7yeras old and lives in Christchurch, New Zealand. Jesse was diagnosed with Optic Nerve Hypoplasia at 2 months of age. He was a placid baby but has always vomited alot. As he grew older he became violent in the mornings; pinching and biting and head banging; until his third feed of the day when he would revert back to my happy loving boy. He development was extremely slow and his muscle tone very low even with daily physiotherepy.He would never eat and vomited on everything I offered (still does) It seems he is extremely defensive of smells.
When he was 4years I took him with me to a Parents of Vision Impaired(NZ) conference and we met a mother ; Fiona who straight away identified Jesse as similar to her daughter. She encouraged me to go back to my doctors and push for an MRI and an endocrine work up.
Three paediatricians later we got the diagnosis of SOD. Jesse was 41/2 years old. The hormone replacements came just in time, with thirty admissions in 9months and some touch and go seizures and adrenal crises it was a stressful time.
Jesse began to walk and develop in all areas. Still not eating he has a gastrosomy tube for nutrition. This year has been fantastic with Jesse growing fast and showing independence and personality. We still have problems with hypernitremia but you learn to manage these things after 7 years.
This website has been
designed to help empower parents of children with ONH/SOD. All the information
herein is subject to opinion. If you suspect your child may have ONH/SOD
it is recommended that you seek professional advice from a certified pediatric
ophthalmologist. No one individual or company connected with this website
assumes any liability or responsibility