On the 4 th of July 2018, Josh and Tenneayle welcomed a beautiful baby boy Sullivan Tye, via a Code Red Emergency Caesarean.
Sullivan was and is everything that they ever hoped for.
Around the middle of January, Sullivan’s Mum and Dad noticed him make a few strange jerking movements, they both believed Sullivan was having a seizure so took him immediately to the hospital.
They were told that Sullivan was simply “playing” around and it was suggested they go home. When they started increasing over night they took him back to the emergency department where a paediatrician said he could request an EEG Scan to determine if they were in fact seizures but this could take up to a month.
Josh and Tenneayle weren’t happy with this solution, they needed answers and treatment for their baby and immediately drove themselves to John Hunter hospital over 2 hours away. This would be
the best decision they ever made.On Tuesday 22nd January, Sullivan was diagnosed with a very rare and serious seizure disorder called Infantile spasms (IS).
Infantile Spasms causes the child to have clusters of seizures, Sullivan’s clusters were lasting approximately 5 mins and within this period he could have
anywhere between 20-30 seizures. This was happening about 8 times a day.
Sullivan was admitted to John Hunter Hospital and started treatment immediately, but there was more investigation to begin. Sullivan’s neurologist suspected that he could have suffered a brain injury during his traumatic birth.On Thursday, the 24 th January, Sully was brave enough to have his first MRI Scan and this revealed the news that Sullivan had suffered a considerable stroke. His neurologist would then diagnose him with Hemiplegic Cerebral Palsy.
Another heart breaking blow to this young family.
Although Sullivan Is on medication for the IS he is still having breakthrough seizures and will need ongoing care and treatment for both conditions regularly at John Hunter Hospital. The goal is to
eliminate the IS completely so Tenneayle, Josh and Sullivan can then focus on Early Intervention Therapy for his Cerebral Palsy which is key to providing Sullivan the best start in life.
There are a lot of unknowns for this young family and I thought this Go Fund Me appeal would be one way to make sure that finances wouldn’t be one of those unknowns.
Josh and Tenneayle have become passionate about bringing about awareness for Infantile Spasms, perinatal stroke and Cerebral Palsy. Please find some information below.https://www.myvmc.com/diseases/perinatal-stroke/ https://www.childneurologyfoundation.org/disorders/infantile-spasms/