They say it takes a village to raise a child, imagine if that child was sick. What would it take to raise that child?
Hi, my name is Laura Funnell and I have created this go fund me page to support my sister and her young family through an extremely hard time. Here is a snippet of a story very close to my heart…..
On 15 February, my beautiful blue eyed nephew Beau was born. His first evening was spent like most healthy newborn babies, meeting the family, feeding, sleeping and crying when he needed something.
From here Beau’s real fight begun….
An MRI found that he had a rare bleed on his cerebellum before he was born. 10 days later Beau was stable enough to be discharged home with support provided by the Newborn and Parent Support Service (NAPSS).
Less than 2 weeks at home an urgent consult was arranged with his pediatrician and Beau was instantly admitted back to hospital to be monitored for seizure like activity.
The EEG results came back irregular and Beaus seizure like episodes became more frequent and fierce. The medication prescribed wasn’t working, so he was airlifted to the Sydney's Children's Hospital in Randwick.
Beau has been cared for by his parents 24 hours a day since his seizures started. This has consisted of them taking it in turns to rest and sit by his bed or hold him to watch every move he made so it could all be documented. By the time Beau was admitted to the Sydney’s Children’s hospital he was having more than 40 large seizures a day, totaling over 300 infantile spasms, with most lasting between 7 -10 minutes.
Last week after every test imaginable, Beau was diagnosed with Ohtahara Syndrome- a rare, drug resistant, uncontrolled form of epilepsy. When you read about epilepsy many people with epilepsy can control their seizures with medications and many cannot- my nephew is someone whose epilepsy cannot be controlled.
Due to Beau’s Ohtahara Syndrome and the generalised form of epilepsy that he has, his future is very uncertain. As a parent this news is heartbreaking and to hear that your child has an uncertain future is devastating. My sister and her partner have been through an emotional roller coaster at a time that should be filled with joy and complete happiness, however their outlook is an inspiration to all and they are doing everything possible to help Beau thrive and hopefully prove the medical world wrong.
I am hoping as a community we can raise much needed funds to assist the McClinton family with Beau’s uncertain future, that will consist of ongoing medical bills, therapy, in home assistance to help with his 24 hour care, travelling and accommodation costs for ongoing reviews in Sydney and medical equipment so that he can live his life at home with his family.
Beau is certainly the little super hero of our family who has endured way too much for a 12 week old baby. As my daughter Myah says, “We need to keep wishing on the stars to bring Beau home and make him better”.
I have added a link for anyone interested in reading more about Ohtahara Syndrome.http://www.epilepsy.com/learn/types-epilepsy-syndromes/ohtahara-syndrome
In a day of a sick child:https://www.youtube.com/watch?v=2MFrTJpdzkk