Supporting Wolf Hirschhorn Syndrome Families
Supporting Wolf Hirschhorn Syndrome Families
We are the Young family and we have a 11 year old daughter Ellie with WHS. Ellie has limited mobility due to her condition and requires a wheelchair.
Aside from the medical issues, Ellie is a very social happy girl, who greets most with a wave. She loves school, music, dancing, swings, parks and generally being around people. Ellie is a very social, loved and valued member of our family unit & community.
Much thanks and gratitude to the team at Help Kids Like Nick.
Melissa, Luke, Ellie and Cooper Young
Ellie pictured with Mum & Dad, Melissa and Luke.
Nick is a young adult who has had many challenges over the years due to severe seizures, low vision and physical and intellectual disabilities. Communicating even his basic needs has been particularly hard for him. A grant from Help Kids Like Nick bridged the gap amount for an Eye Gaze computer which has allowed him to start to express himself, and to play some games! He is well loved by his family and extended family and lives in Brisbane.
Video of Nick using his eyegaze computer with his Speech Pathologist, Leanne.
Help Kids Like Nick strongly endorse the Bi-annual conference hosted by the AWSSSG (Australian Wolf Hirschhorn Syndrome Support Group) where families from all around Australia meet for a weekend of socialising and exchanging information. Our handsome young friend, Ryan Henry (pictured) and his family travel long distances from their place of residence in Western Queensland. HKLN have been able to offset some of the travel costs for them and other families with our travel subsidy.
HKLN have supported the last two conferences and provided assistance to many families and are looking forward to providing similar assistance for the 2019 Conference being held at Port Macquarie in October.
Reaching the regular milestones of childhood comes with great excitement and even more so for children with WHS. When Eve Barnes began walking unassisted it was a proud moment for her and her family. To help Eve achieve this, she requires custom-made specialised orthotics which need to be regularly refitted as Eve grows. HKLN have happily funded the expenses for Eve’s orthotics.
HKLN have also helped fund other families with mobility aids such as wheelchairs, Dynamic walker, modifications to vehicles and Therasuit therapy.
When Charlotte Orr and her family were living in Darwin, they travelled down to Adelaide to access a highly specialized neuro-developmental programme for Charlotte. Over six weeks, with 4-5 hours of daily exercise Charlotte achieved great progress, going from being able to sit to commando crawling, being able to put things in her mouth and signing.
A grant from HKLN funded three days of one-on-one attention for Charlotte and accommodation and travel expenses.
Samuel Unsworth’s family were granted money from Help Kids Like Nick for respite. Samuel was able to attend his usual respite care for two weeks whilst his parents took their first holiday in over 20 years.
At the moment, Samuel’s family is focussed on helping Samuel to continue to grow in a learning supported environment as they know that this is essential for his ongoing development. They are continually surprised and buoyed by his capacity to learn new skills.
HKLN has helped several other families with funding for respite care.
Rachael Doecke loves cooking. Help Kids Like Nick provided money for the purchase of a Thermomix. This purchase was a huge success and meant she could safely make her own milkshakes and help to make main meals for the family. This was a big step up from only being able to measure and mix ingredients. Since then she has gone on to bigger and better things working with her mum in their business ‘Ability Chocolates’ in the Barossa Valley.
Other families have benefited from the HKLN funded purchase of a Thermomix to facilitate food preparation. The diet and food requirements can be highly specialised with many of the children required a PEG (Percutaneous Endoscopic Gastrostomy) for feeding.
Rachel with her Parents, Chris and Noel and sister Sarah.
Caitlin Campbell and her parents travelled from Darwin to Adelaide to undertake the Lively Eating PEG Weaning Program. The intensive education and therapy allowed Caitlin to increase her oral intake and now 3 years later, she has had her PEG removed and now eats completely by mouth. HKLN proudly assisted with financial support for this venture.
Caitlin is pictured with Linly her Mental Health Nurse.
Sofia Gerbino – Testimonial from Sofia’s Parents, Amanda & Gaetano:
“Hi HKLN, I just wanted to say thank you so much for our funding for some overnight respite while my husband was overseas for a 3 week period and I was home with a child who doesn’t like/need sleep!
Overnight respite is extremely expensive and I wouldn’t have been able to afford it myself. It was so easy to apply for the funds and very quick. You made me feel very comfortable as it’s not always easy to ask for help. Thanks again so much!”