Projects ยป Sean Stimson Appeal

Sean Stimson Appeal

Mum Tara with 5 year old Sean
Mum Tara with 5 year old Sean

ean, Tiarna and Tara meet The Wiggles
Sean, Tiarna and Tara meet
The Wiggles

Young Sean Stimson wearing his protective helmet
Young Sean Stimson wearing his
protective helmet

Sean being fitted foro the chair.
Sean being fitted for the chair.
The reclining action is unique to
the Panther Wheelchair, hence
the hefty price tag

A tray can be attached to Sean's chair.
A tray can be attached to Sean's
chair to enable him to
participate in activities or
have meals while at school
or out and about

Sean riding his new bike
Sean riding his new bike

Sean is an 8 year old boy with Dravet Syndrome- a severe, rare and life threatening form of epilepsy that does not respond well to treatment. Sean’s seizures started at the age of 12 months old and have greatly increased in type and frequency sometimes having hundreds each day. As a result Sean often cannot walk, talk, go to the bathroom feed or dress himself. He has severe developmental delay in speech and fine motor skills and needs constant supervision to ensure his safety. Sean also has diagnosis of ataxia, hypotonia, a haemotology condition that his haemotologist has never seen before, dysphagia, dyspraxia, pervasive developmental disorder - not otherwise specified (also known as atypical autism).

Dravet syndrome affects every part of Sean's day to day life. His cognitive skills, his receptive skills, his balance, his immune system - even how his body regulates its temperature, is affected by Dravet syndrome.

Mum Tara is a young single mother to sean and his younger sister Tiarna. Tara was only 16 when she gave birth to sean, and only 17 when he had his first seizure but despite this Tara achieved her HSC by enrolling in the DALE Young Mothers’ Program and continues her studies while taking care of Sean and Tiarna. Tiarna also has health issues, caused by her traumatic birth. Shortly after delivery, tiarna stopped breathing and required intubation and NICU care. As a result, tiarna has Hypoxic Ischaemic Encephalopathy stage 1 (mild brain damage) which has resulted in tiarna also having epilepsy, as well as moderate developemental delays and chronic asthma. Tara is unable to work due to the frequency of Sean’s seizures and hospitalisations but while on Centrelink benefits has still managed to save some funds toward Sean’s needs. Tara established a Facebook page “Kids With Epilepsy” specifically to inform and provide a forum for discussion; with over 2,100 members it is an important means of support for families worldwide.

Sean's specialist team includes but is not limited to - a paediatric neurologist and neurology nurse, a paediatrican, a dietician, a haemotologist, an immunologist, a gastroenterologist surgeon and a gastroenterology nurse, an ear nose and throat surgeon, occupational therapists, speech therapists, podiatrist, physiotherapists, a paediatric neurologist and an epiologist both of whom are at Westmead Children's Hospital and another paediatric neurologist at Sydney Children's Hospital at Randwick.

Sean is enrolled at the Five Islands Special Needs School and is encouraged by his family to be as independent as possible in all areas. Sean urgently required a specialised wheelchair to provide a safe means of transporting him in the community, to enable him to participate at school excursions and also to provide a viable and safe post seizure option. Sean has had a number of injuries as a result of his frequent and unpredictable seizures therefore his need for equipment to increase his, his family and carer’s safety is a priority. The new wheelchair was delivered in November 2009 and enables Sean to sit upright with support; be rested post a seizure, encourages him to engage in the environment and helps to increase his level of alertness. This chair cost $9,710 and was paid for by means of community support and a grant from Variety Club.

Sean will always need ongoing financial support due to his Dravet Syndrome and resultant family circumstances. With this in mind Kiwanis, a community service Club focused on the needs of children, has pledged their support and will operate a bank account specifically for fundraising for Sean; initially set up to fund the wheel chair ($9,710) we have also paid for a seizure alarm ($752) for use overnight, orthotics and balance shoes ($600) a new feeding chair insert ($600) and a new helmet for head protection.  More recently a push bike was purchased, with special fittings attached which means Sean can enjoy riding his bike as other kids do.

Currently at the top of the needed list is a new used car for the family. Tara currently drives a 2002 Kia Sportage 4WD but it was recently involved in a car accident so despite being repaired, it's safety has been slightly compromised. This car was purchased nearly 4 years ago with money Tara saved from her centrelink payments. Unfortunately though, as Sean grows his needs are not being met with this car. Because of Sean's hypotonia his movement is affected making it extremely hard for Tara to lift Sean into the car, especially now that he has reached 28kgs. There is also his wheelchair that needs to be transported everywhere Sean goes. The wheelchair alone is 26kgs and Tara lifts this in and out of the car unassisted.
Your donation, however small will be gratefully welcomed.

To make a donation toward Sean’s ongoing care please go to your nearest Westpac branch.

Banking Details: Westpac, The Junction
BSB: 032569
Account Name: Kiwanis Club of East Maitland “Sean Stimson Appeal”
A/c No: 185413


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