One Australia mother has begun a campaign for her son, who suffers from Spinal Muscular Atrophy (SMA) Type 1, to help get him the help he needs and to raise awareness about the disease in Australia.
Mack Darlington was diagnosed with SMA when he was born, Adelaide Now reports. At the time, doctors guessed that the now 2-year-old had only months to live. The condition, which Mack lost his 4-month-old sister to, causes deterioration of motor neurons in the spinal cord. The disease has left Mack unable to move, swallow or breath on his own.
Now Mack’s mother, 28-year-old Sharyn Colledge, is concerned that he will not survive for much longer, since the team at The Women’s and Children’s Hospital in Adelaide, Australia, has refused to give Mack a long-term feeding tube and tracheotomy. Colledge has argued that the additions would allow Mack more adequate respiratory support, which his current BiPAP can’t provide. BiPAP is a non-invasive breathing support system, DailyMail Australia reports.
According to doctors, the tube and surgery would make Mack a burden to himself, his family and the community, College claims. The team allegedly noted that it would be “ethically” wrong to perform the surgeries on Mack.
“We couldn’t believe it,” Colledge told DailyMail Australia. “We live with Mack every day and he is anything but a burden.”
Colledge noted that support for kids in Australia with SMA is extremely low, which is why she started a Change.org petition asking Premier of South Australia Jay Weatherhill to consider her case and reverse the hospital's decision. To date, the petition has received over 28,000 signatures.
Photo Credit: Sharyn Colledge via DailyMail