McLean Family receive support from the Illawarra Community Foundation
At 2 years of age, Ruby McLean from Woonona has had a rough start to life. Diagnosed with Spinal Muscular Atrophy (SMA) at just a few months old Ruby remains happy and bubbly, despite her condition.
SMA is a genetic disorder that has varying degrees of debilitation and is a degenerative disorder that affects nerves – motor neuron.
SMA is a fatal disorder to which there is no cure. Children typically don’t survive more than 3 years with 50% losing the battle within the first year. Ruby unfortunately spends a large portion of her days in hospitals or attending varied therapy sessions in order to maintain optimal health and therefore the best quality of life possible.
Children with SMA typically encounter complications such as: being unable to walk, sit or hold their heads unaided, severe gross motor development delay, swallowing and feeding difficulties, & breathing difficulties. On top of this, they also have a compromised immune system making them very susceptible to upper respiratory infections.
On a daily basis, Ruby’s mother, Haley is required constantly at Ruby’s side to feed her and ensure her caloric intake is achieved through her feeding tube. Additionally, she must ensure that the BiPAP breathing machine is used to help with breathing, along with moving Ruby through her various therapy aid equipment, use of a cough assist machine and physio therapy on her chest to remove secretions.
Haley is unable to work and her partner has had to take a pay cut in a new job closer to home so that they can accommodate Ruby’s needs for the remainder of her life. The reduction in income has had a significant effect on the family as does the expenses associated with Ruby’s growing medical needs.
"Ruby's needs are substantial and take a massive toll on our family both emotionally and financially. But she is the most amazing little girl, we are so lucky to have her in our lives, she makes everyone she meets smile and makes us better people" says Ruby's mum Haley.
After raising 1.8 million dollars last year via the i98FM Illawarra Convoy, The Illawarra Community Foundation has funding available for families in the Illawarra, Shellharbour, Kiama, Wollondilly and Shoalhaven areas who are facing financial difficulty due to potentially life threatening medical conditions.
After submitting an application to the Foundation, the family will now receive $2,000 in fuel vouchers & $2,000 in food vouchers, to help relieve some of the financial pressure the family faces in dealing with Ruby’s condition.
“We are proud to present $4,000 in support to another deserving family in the community that is doing it tough. Hopefully the funds provided from the Foundation will provide some much needed relief for Ruby’s parents” says Marty Haynes, i98FM Breakfast Show Host.