Emma’s Syndrome
Posted by familysnows on 04 Apr 2008 at 8:33 pm | Tagged as: Prayer Concerns
We share our trip to Holland with many. Meet our dear friend Emma. Look at her beautiful face, read her story, watch her video and please keep her and her family in your prayers. [gallery]Emma’s Syndrome: 11-Month-Old Has Rare Genetic Disorder
Bloomington girl’s genetic disorder has doctors stumped - Click HERE for video
BLOOMINGTON, Minn. — In her first five months of life, Emma Kissock seemed healthy, but everything changed last September with a trip to the doctor for a cold, followed by months of pain and uncertainty.
Although just 11 months old, Emma has been in the hospital 7 times since birth and she’s had 8 surgeries.
The surgeries have fixed a dislocated hip and, more recently, inserted a feeding tube into her stomach. A brace helps keep her legs in place and a helmet protects her head. As if that’s not enough, Emma’s immune system is very weak, making her more susceptible to getting sick.
She’s given six medicines twice per day, but her scariest problem is a rare genetic disorder her parents don’t have any answers for.
The disorder is so rare, doctors don’t have a name for it, so they’ve called it Emma’s Syndrome.
“I haven’t been able to figure out what syndrome she has,” Dr. Nancy Mendelsohn said. “I’ve shown her pictures to people that do what I do across the country, to my colleagues, and nobody has been able to figure it out just yet.”
Dr. Mendelsohn practices Clinical Genetics and Pediatrics in Burnsville, Minneapolis and St. Paul.
“If we know what she has we know what to expect for her future,” she said.
While geneticists study Emma’s development and condition, her mother Robin spends most days charting her medicines and running her baby girl to doctors appointments.
“We don’t know what normal is going to be for her,” Robin said. “We just pretty much take one day at a time and do the best we can.”
BENEFIT FOR EMMA
Spaghetti Dinner & Silent Auction
Sunday, April 6 2008
11am- 2pm
St. John’s Lutheran Church
4th & Oak Street, Chaska
Link to more of Emma’s story and a link for donations: http://emma.stjohns-chaska.org
Please consider contacting the doctors at Thoughtful House in Austin, Texas.
Dr. Bryan Jepson - Dr. Doreen Granpeesheh - Dr. Arthur Krigsman
512-732-8400
http://www.thoughtfulhouse.org/
http://www.thoughtfulhouse.org/faq-medical.htm
I saw Emma’s story in the Star Tribune and her health issues sound similar to what my son experienced when he was an infant. I hope this message can be forwarded to her family.
My son, born in 2001, was also born healthy, although 2 weeks early. After 2 months, he developed torticollis, and plagiocephaly. Then he developed eczema, chronic acid reflux, chronic projectile vomiting, and allergies. He was seeing a physical therapist, a cranio-facial surgeon and a gastroenterologist by 6 months and was on a lot of medications. He improved until about 15 months when he developed immune dysfunction, developmental delay, and more gastrointestinal issues. He’s been diagnosed with encephalopathy, apraxia, autism, adhd, sensory integration disorder and receptive and expressive language disorder.
I’m not writing to share bad news, but to share that when he was 4 years old, I investigated the link between vaccinations and his health problems. I was stunned that the symptoms and timing of my son’s health issues fit vaccine injury and there are many other children out there with the same experiences. I found a immense amount of independent information on the website http://www.generationrescue.org/ to learn about biomedical treatments to reverse my son’s health issues. Today at 6 years old, he is recovering.