A Pool for Braxton (Bubbe)
May 9, 2014
Ellis and Elly Van Schurr from Langdon are holding a Zumbathon fundraiser on May 25 to help raise money for the Lockie family and their son Braxton. When Tara Lockie, also from Langdon, was approximately 20 weeks pregnant doctors told her something might be wrong with her baby. Tara and her husband Brock knew more than anything that, no matter what, they wanted to have their son, and that they would love him more than anything. Braxton (Bubbe) Lockie was born on May 18, 2013. At three months old he started having seizures. Scans showed there are physical differences with his brain. Braxton has Dandy-Walker Syndrome, which is a congenital brain malformation.
The Lockie family is trying to raise over $30,000 to be able to buy a swim spa pool for Braxton. The one they hope to purchase will meet his needs the most, but it also happens to be a little more expensive. “He does water therapy at the Alberta Children’s Hospital pool. It’s hard for us to get there and there isn’t a whole lot of pool times for kids with his complications. It helps him so much that we just want to have one here,” said Tara. Since birth Braxton has already been through surgeries to remove cataracts from both his eyes, and to insert a feeding tube. He has also had MRIs and EEGs and X-Rays. At night he needs oxygen. He has tried 10 different anti-convulsant medications and a special diet but still has 20-50 seizures a day, and is blind.
“All of this has delayed his development. He is still like a newborn in most ways and will be disabled for his few years he is expected to survive,” said Lockie. “The big thing that we have found that helps is water therapy. Braxton normally can’t hold his head up or sit on his own, but with the buoyancy of water and with a flotation ring, he can move his body. In water he can exercise his muscles so that he might be able to move on his own eventually.”
When Braxton has one of his seizures it cause a glitch in his brain that can cause him to stop breathing, and since breathing can be an issue with the Dandy-Walker Syndrome there is a high chance that during the night Braxton could pass away. Often children with Dandy-Walker don’t live past the teenage years. When Tara and Brock were at the Alberta Children’s Hospital with Braxton over Christmas for six weeks the staff told them to pick the things that were most important to them for Braxton over the next few years, and to focus on those. “So we said we want him to be comfortable, which for us meant for him to be home again,” said Lockie. “We wanted him to be able to swim, that was one of the things we expressed to the hospital staff and to each other because that is what gives him the most joy. We want to give him the most joy and ability to move. Comfort, smiles and swimming are the things that are going to be our priorities for the next couple of years. “Braxton is such a gift to us and we just want the best for him. We’re just extremely grateful for whatever help comes our way and thankful for the help we have seen and the community that has come to help us.”
The Zumbathon will be taking place on May 25 in Calgary from 3 p.m. to 4:30 p.m. at the Scandinavian Centre, 739 20 Ave NW. Advanced registration is $20 and $25 at the door. Braxton would like everyone to wear something green since it’s his favorite color. For more Information and registration got to http://zumbaforbraxton.weebly.com/. Tara Lockie also has a blog where people can find out how Braxton is doing, www.braxtonlockie.com. Anyone interested can also donate through the site.
'Medical mystery' baby thrives in water
May 17, 2014
Tomorrow is Braxton Lockie's first birthday. But unlike other one-year-olds, Braxton won't be able to eat birthday cake or even see the candle that represents his first year of life.
In fact, he won't be able to crawl or walk or even talk. Braxton was born with Dandy Walker Syndrome. His brain isn't like other kids - his visual cortex is underdeveloped, so he can't see; he has seizures and can't eat except through a feeding tube. Movement is challenging because the part of his brain that controls his muscles, the cerebellum, isn't fully developed. As a result he can't even hold up his head. He's already been through more than most in his short life.
"It has been a really hard year for us," says Braxton's mom, Tara. She and her husband Brock, both 27, are dedicated to making their son's life shine. Until recently Brock was on medical leave from work, staying at home to help care for his son and to give Tara some much needed reprieve.
Braxton has had to learn to swallow, breathe, suck and eat. "These are things that come naturally to most babies. He's had to work really hard to learn them and he still struggles."
The one thing that seems to really make a difference is water therapy. With neck support from a flotation device, coupled with the water's buoyant properties, Braxton can move his arms and legs.
"He doesn't have any connections between left and right brain so the two sides of his body shouldn't be able to move in coordination, but we've seen in the water that he can. He actually can doggy paddle," says Tara.
With the water therapy, Braxton seems to be improving. His mom attributes his new-found abilities to the brain's remarkable ability to make new connections, where different parts of the brain take over for damaged or underdeveloped areas. "There is a lot of research out there showing that these things happen," says Tara. And movement may just be the key.
Braxton can't easily swim in public pools for risk of being overstimulated by the lights and sounds, which give him seizures. But thanks to some generous donations, the Lockies have been able to put a deposit on a home swim spa, so that Braxton can swim any time of day in a quiet and warm environment. And to further help with costs neighbours, Ellis and Elly van Schuur, are hosting a Zumbathon on May 25 at the Scandinavian Centre in Calgary (739 20 Ave. N.W.).
"It's so amazing because we had never met them before and they heard about what we were going through and just wanted to help," says Tara.
The Lockies really don't know what the future holds for Braxton. Tara says that the doctors can't really give them much information as Braxton's symptoms are atypical - he was born blind, but his sight is improving; he can now differentiate light and dark and see colour (green seems to be his favourite) and he can move his legs.
"He is a medical mystery and it is hard not having any answers when it comes to your baby," says Tara. But one thing the couple knows for sure: "He's our little miracle baby and we love him more than anything."
Mom asks residents to move their bodies in support of her son
Braxton (Bubbe) Lockie, from Langdon, isn’t your typical one year old; he is not crawling around getting into everything or pulling himself up to a wobbly standing position in preparation for his first steps.
Instead Braxton is confined to a body that doesn’t work, he can’t lift his own head or stand on his own, he requires oxygen when he sleeps, a feeding tube to get nutrients and his vision is severely impaired. But when he gets into the therapy pool at the Alberta Children’s Hospital in Calgary, he is free.
He kicks his legs and splashes about with his arms as the weightlessness and buoyancy of the water allow him to more easily move his limbs. His face, which is plastered with a big grin while he’s swimming, is kept above the water with the help of an inflatable floatation tube.
“I was just amazed the first time I took him in the water,” said Braxton’s mom Tara Lockie.
Braxton has Danny-Walker syndrome, a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement). The syndrome usually results in an enlarged head as fluid fills the space in the cranium that houses the child’s smaller cerebellum, but in Braxton’s case his head is quite small and about the size of a newborn’s head.
“His co-ordination is the big thing that is effected by that part of the brain,” Lockie said.
That lack of motor control makes it difficult for Braxton to move. He can’t hold his head up or sit on his own.
The syndrome has also presented itself in Braxton in the form of seizures (which he has between 20 to 50 of per day) severe vision impairment, breathing problems and the need for a feeding tube.
The little boy has had to have two surgeries already in his short life, one to remove cataracts from both eyes and one to insert the feeding tube. He is also dependent on oxygen when he sleeps and is on a special ketogenic diet – a high-fat, adequate-protein, low-carbohydrate diet that is used to help treat refractory epilepsy.
“His life expectancy is pretty short,” Lockie said, adding doctors have told the family Braxton will likely only live about 10 years. “Most of the families we know (that have kids with the syndrome) make it to the early teens.”
It wasn’t until Lockie took Braxton to water therapy this last fall that she was able to see her son move freely.
“To me, it’s like he can do whatever he wanted to do if he wasn’t given this body,” Lockie said of what it’s like when Braxton swims.
“There is a very smart boy in there but he is trapped in a body that won’t work for him.”
Seeing her son’s obvious enjoyment in the pool has spurred Lockie to do everything in her power to get Braxton a pool of his own but that comes with a hefty price tag of about $30,000 for the swim spa and enclosure that will allow it to be used year-round.
“That’s just my wish, to see him enjoy life and to know what that is. I want him to have those positive experiences because there’s already been so many negative ones in his life,” Lockie said.
To help raise funds for the pool, Langdon Zumba instructors Ellis and Elly van Schuur are organizing a Zumbathon on May 25, in honour of Braxton and to raise fund towards the purchase of a pool for him.
Having a pool of their own would allow Braxton the valuable exercise and freedom he can’t currently get much of. The pool at the hospital is only available to the tiny swimmer once every two weeks for one hour and it takes an hour of driving both ways to get him there.
“He is still so tiny, so we need warmer water that only a couple of pools offer,” Lockie said.
“It is also difficult because Braxton can’t easily swim in public pools for risk of being over stimulated by the lights and sounds, which gives him seizures.”
The Zumbathon will be held at the Scandinavian Centre in Calgary, located at 739, 20 Ave. NW, from 3 p.m. to 4:30 p.m. and costs $20 for the advanced registration and $25 at the door. Zumba is a popular form of exercise that combines dance movement and aerobics.
“It’s easy to move our bodies,” Lockie said, “so by coming to move your body at the Zumbathon you can help Braxton to move his.”
Organizers are asking participants to wear green as that is a colour Braxton can see and responds to even with his vision impairment.
The money raised from the event will help Braxton get his pool.
“We’re extremely grateful for the support we’ve seen in our community,” Lockie said. “It really means the world to us.”
To register for the Zumbathon, visit zumbaforbraxton.weebly.com
To donate, visit braxtonlockie.com