Tara Byrne describes her daughter Mackena, a three-year-old girl who was born with Spastic Diplegia Cerebral Palsy, a “fighter who never gives up and has the drive to always keep trying.”
Mackena is the second youngest of six children and lives in Markdale with her family. She was born in 2016 over two months early at 31 weeks.
“Unfortunately as a result of her being born early, she suffered a brain bleed which caused her to have brain damage and now has Spastic Diplegia Cerebral Palsy,” Byrne wrote on a GoFundMe page created to raise funds for special surgery for Mackena.
After she was born, Mackena was air-lifted to London Children’s Hospital and then spent three weeks in the Neonatal Intensive Care Unit in Owen Sound. Her parents didn’t know then what was still to come.
Before Mackena was diagnosed with cerebral palsy at one-year old, Byrne knew something wasn’t right—Mackena wasn’t meeting the typical milestones of an average toddler.
Byrne called a specialist to have Mackena evaluated while waiting for her to be seen by her paediatrician. Once diagnosed, she started physiotherapy and occupational therapy and worked with a child development worker to get her muscles moving and stretching. Mackena receives Botox injections her muscles every three to four months to help her muscles relax, receives casting on her legs, and is on medication to help with severe pain in her back and legs.
“She’s always yelling ‘I got this mama’ when attempting to stand and walk with her walker. She can light up a room with her jokes and her big smile and melts your heart when she wants all her family to hug her in a group hug which is something she asks for often,” says Byrne.
Mackena’s family is currently raising money for a special type of surgery in St. Louis, Missouri that could alter her disability for the rest of her life.
Selective dorsal rhizotomy surgery involves cutting nerve fibres that come from the muscles and enter the spinal cord. SDR results in improvements in sitting, standing, walking, and balance control in walking and is the only surgical procedure that can provide permanent reduction of spasticity in cerebral palsy.
Without the surgery, Mackena’s muscle tightness will continue to get worse and cause her severe pain, as well as worsen her deformed feet. Byrne says that without the surgery, the worst case scenario is that Mackena will become wheelchair-bound because of the extreme stiffness in her legs.
When they began fundraising, Mackena’s parents reached out to family members in Huntsville who are part of the local group, Ghost Riders, to help raise money for Mackena’s surgery.
The Huntsville chapter of Ghost Riders, led by club founder/president Shannon Summerhayes, began in 2016. The Ghost Riders riding club is one of eight across Canada and they all host events hoping to make a difference in their communities.
The club is hosting their annual Whiskey Poker Run event this weekend in order to raise money for Mackena’s surgery.
“When we were approached with the story and details surrounding this young girl’s medical struggle we all voted and agreed that we will do what we can to stand behind the family in hopes of helping reach the final goal of providing Mackena with the treatments she needs and lessening the financial stress on her family,” says Summerhayes.
The fundraiser will be held at the Smokin’ Hot BBQ lot on Highway 60 on Saturday, August 24 starting at 8 a.m.
“Smokin Hot has been our corporate sponsor two years in a row. Julie and her team provide the event location, as well as the final dinner. They are truly a huge part of our success,” says Summerhayes.
To kick things off Smokin’ Hot will be selling barbecued breakfast sandwiches and Moose FM will be live on location with their Summer Event Team giving away swag.
The leisurely ride starts at 11 a.m. and is welcome to all. The price is $25 per rider and includes dinner provided by Smokin’ Hot. The evening portion will start at 4:30 p.m. and there will be raffle draws, live entertainment provided by Christina Hutt, a BBQ Dinner and meeting Mackena and her family
If you aren’t a rider but want to support Mackena and her family, you can purchase a dinner ticket for $10 or come for breakfast between 8 a.m. and 11 a.m.
The surgery would mean so much to our family but most importantly to Mackena as she will be able to live pain-free and get the opportunity to live carefree like every child should. To see your child in pain every single day is so heart breaking. When she cries out in pain asking you to ‘take the hurt away’ and the only thing you can do is help alleviate the pain through massage and medication that doesn’t always work is the hardest thing a parent has to watch.
Tara Byrne, Mackena’s mom
The family is hoping to raise a total of $80,000 for Mackena. The cost of surgery alone is $65,000 and it will cost $15,000 for physiotherapy and equipment in the month following surgery. The family has completed the intake process and is waiting on her spine and hip x-rays to get a date for the surgery.
Although a similar surgery is available in Canada, there are many barriers that have stopped Mackena from receiving it here including limited amounts of spots available.
“Through our research we know that Dr. Park at St. Louis Children’s Hospital in Missouri Is the most experienced SDR surgeon in the world and has treated over 4,000 patients across 71 countries around the world,” said Byrne. “After having the pleasure to speak with over two dozen Ontario families that have gone to St. Louis Children’s Hospital to have Dr. Park preform surgery on them or their children we know he is the right surgeon to perform the SDR surgery on our daughter.”
The family also states that if they raise over their goal amount the remainder of funds will be donated to the Ronald McDonald House Charities to assist other sick children.
To support Mackena’s surgery fund visit her GoFundMe page here.
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