NEILBURG – A family from Neilburg has been chosen to receive the funds raised at a hockey tournament in Martensville named the Fletcher Cup. This is the second year the fundraising tournament is being organized and the money is being donated to a family who requires additional funds for travelling to medical appointments.
Chad and Hannah Graham from Neilburg, have embraced parenthood the best they can with their boys, Joshua and Declan. Both boys were diagnosed with I-Cell disease, also known as Mucolipidosis 2 (ML2).
ML2 is a rare disease in which cells within the body is missing the enzyme responsible for removing waste byproducts from the cells. It affects every body system which causes complications throughout the whole body. It is mostly seen in the brain, causing severe development delays but can also be seen causing weaker bones, heart function abnormalities, and low lung volume which runs a higher risk of pneumonia. The average life expectancy for I-Cell children is seven to ten years of age, with the most common cause of death is pneumonia or heart failure.
The Grahams noticed Joshua having problems with his health along with developmental stages not being met just before Joshua turned one. They had been working with multiple specialists and running tests for close to a year before the final diagnosis of I-Cell disease in March 2021. Relieved to finally have an answer, they were not expecting all that goes along with I-Cell disease.
Chad had started his own plumbing business in 2022 while Hannah stayed home to raise Joshua. She was also expecting their second child.
Close to a year after Joshua’s diagnosis, son Declan was born. With the knowledge the family already had, Declan was tested for I-Cell as well and received his diagnosis at the age of three months. Both parents knew they had a long road ahead of them with having two complex children to raise.
On a day-to-day basis, the boys are just like any other kid. Joshua enjoys riding shotgun with Chad in the side-b-side and drinking chocolate milk. Declan is a go-getter, always entertaining anyone willing to watch. Although both parents are trying to enjoy each moment they have with the kids while they can, the constant care that is required has both mom and dad running raged.
This past summer, both children underwent surgery to have gastrostomy tubes, permanent feeding tubes that go through the abdominal wall into the stomach, installed. Although they are an improvement, the g-tubes require much more upkeep. Both boys also need frequent checks through the night to ensure the tubing for the CPAP and Airvo machines are not tangled.
With the sleepless nights and constant trips to Saskatoon, Chad is unable to keep consistent business hours. The Grahams were recently approved to receive some help from home care, giving Hannah the help that she needs and Chad a chance to provide more for his family with steady hours.
Since the boys had their surgeries, more appointments are needed in Saskatoon to monitor sleep apnea, weight gain, heart, lungs, spine and their overall general health. Some months have more appointments than others and some are early in the morning.
“We are so blessed and thankful for the Ronald McDonald House, allowing us to spend time there when we have those early morning appointments or multi-day stays,” says Hannah.
Going to the appointments is not as simple as getting up and going. Chad often has to take the day before the appointment off to help pack the family’s minivan. Equipment such as walkers, feed pump supplies, special seating on top of their clothing and sleep apnea machines also need to be packed for the trips. As the boys grow older, the room in the vehicle is getting smaller and smaller. That space will get even tighter as Chad and Hannah are expecting another child.
“All of our children will have a 25 per cent chance of having ML2. I have heard of a family of seven children, five of which had ML2. We will see what God has planned for our family,” says Hannah.
The family had received financial donations through the Lori Craven Memorial Tournament based out of Lloydminster as well as government programs covering the costs of the g-tube and oxygen supplies. Currently, the biggest expense for the family is travel to appointments. With little external help, Hannah has used the internet to connect to other parents with complex children. This connection has now opened new doors for the Graham family.
Support group mom, Ashley Hobbins from Martensville, had reached out to Hannah. “She asked us some questions then Travis Sorenson contacted us, telling us we had been chosen to receive the proceeds from the second annual Fletcher Cup U9B Hockey Tournament.”
Sorenson had organised the tournament last year after finding out a local boy named Fletcher was needing help getting to Toronto for medical reasons. Fletcher’s dad, Tyson, coached Sorenson’s son during 3 on 3 hockey. Sorenson had help from other team managers and the Martensville teams organizing 50/50 draws and raffle tables. The tournament gained momentum and Sorenson started calling it “The Fletcher Cup.” Once the tournament was over last year, Sorenson was able to donate $10,000 between the Hobbins family and Make a Wish Foundation. With little to no overhead costs, Sorenson is proud that more donation money makes it to the recipients than the bills.
Fletcher and his twin sister were born in April 2018. Early on in his life, he had difficulties keeping weight on and feeding, along with unco-ordinated and jerky moments. At five and a half months of age, an MRI scan determined that the infant had periventricular leukomalacia, which was due to a brain injury from lack of blood or oxygen while in utero. Fletcher also underwent genetic testing, which found mutations in his genes. As he has gotten older, doctors have classified him as having dyskinetic quadriplegic cerebral palsy.
Fletcher’s family knows his physical abilities will not improve yet they do worry about the amount of pain he is in daily with the dystonia and muscle tightness. He was approved for deep brain stimulation, where holes are drilled into the skull and electrodes are planted deep into his brain where movement is controlled. A battery is also placed into the patient’s chest to power the electrodes. The surgery was done in Toronto in early March and due to some complications, was redone in September. Fletcher’s mom, Ashley Hobbins, has been by his side through it all and was happy to be home again just before Halloween.
“It’s overwhelming to see the love and support from everyone that rolls in during these times of need; whether it be hard times when we are away or times to celebrate like when we are finally coming back home to all be together again. This is a time of lots of happiness but a huge transition as we get back into the normal routine of things after such a very long and difficult couple months,” says Hobbins.
This year’s Fletcher Cup has 10 confirmed U9B teams, with room for two more. Donations can be made by e-transfer to [email protected] and for additional information about the tournament, contact Travis Sorenson at 306-716-4289.
