Supporting eight-year-old Makayla to take her first steps of independence is an achievement MacKillop Family Services’ Disability Team is very proud of.
Working closely with Makayla’s family, the team supported Makayla to attend the School Holiday Program which provides a range of community-based activities for children and young people with disabilities.
Makayla’s Mum Ashley understands that it is important for Makayla to get involved in activities away from her family,
Up until she joined the Holiday Program 18 months ago, if Makayla wasn’t with me, she was with her Dad, so it’s been great for her to take her own steps out into the world without us always being there. She also gets to be with other adults she can trust and meet other kids and start to build those friendships.
“It’s great for her to go out and have her own activities, just like her younger brother does, and I can relax as I know she is safe.”
Makayla was born prematurely, and because she was a floppy baby who didn’t cry and had trouble feeding, she was moved to the Children’s Hospital where she was diagnosed with Prader-Willi Syndrome (PWS).
PWS is a rare genetic disorder that affects development and growth. It is thought that around one in 10,000 to 20,000 children are born with the syndrome. Makayla’s muscle tone is affected and she has to have growth hormone injections six times a week. Makayla also has to follow a strict diet and routine as PWS can cause hyperphagia, which means that people are constantly hungry as their brain doesn’t help them regulate their appetite or tell them when to stop eating.
Ashley first heard about MacKillop when Makayla was born. She was researching activities for Makayla and contacted MacKillop,
“Case Manager Tegan is fantastic, and she has not only supported me through listening, but she can provide solid advice without that emotional point of view that a parent has.
“One of the first things she helped us with is finding a dance class. Makayla was so keen to start dancing and I didn’t know where to look, but Tegan pointed us in the right direction and Makayla loves her dancing class – she’s just taken part in the end of year performance and was so excited,” said Ashley.
Next year, Makayla is moving to a new school and she can’t wait. At her transition day, she was delighted to meet a friend in her class whom she already knew from MacKillop’s Holiday Program. She is also looking forward to the 2019 Holiday Program and has already selected her activities where she hopes to see her new friend again.
Makayla is currently waiting on an NDIS plan and MacKillop has helped Ashley understand what is involved in the process,
“I’ve been to a meeting in the MacKillop offices in Footscray where Tegan and Emma held a NDIS workshop where we could ask questions.
“I think I am as prepared as I can be and look forward to having our meeting and putting the plan in action next year so that Makayla can get the help she needs, the earlier the better!”
