Our dear friends, Aaron and Sarah Guta, have journeyed through an extremely difficult road over the past year. Their youngest son, Jaxon, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 in March 2020 at the age of 9.5 months. Please consider donating to alleviate the financial burden this wonderful family is facing as they continue to care for Jaxon. 

The  following is an overview of Jaxon's journey from the Guta family:

Spinal muscular atrophy is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement. Jaxon is missing the SMN1 gene which produces protein to keep nerve cells healthy so they can connect to your muscles in order to move, eat and breathe. We are very thankful that Jaxon does have three SMN2 genes. The SMN2 genes are commonly called “back up genes'', which produce protein at a much lower rate and are not able to keep up to maintain healthy nerves. Since Jaxon has these three back up genes, it puts his prognosis at a more positive outcome than a Type 1, which left untreated, doesn't usually survive past the age of 2, due to breathing and eating issues. Symptoms typically start for Type 2 between 6-18 months with a slow decline in muscle function. We were fortunate enough to have caught Jaxon’s condition somewhat early at 9.5 months, as early intervention is key for Jaxon. He started receiving Spinraza in April 2020 which requires spinal taps every four months. Spinraza helps boost the SMN2 protein production to keep the nerves healthy. We found out in March 2021 that Jaxon was preapproved to start an oral medication. This treatment has been financially covered by the government through Health Canada’s Early Access Program. He is able to start this daily oral version in June 2021. This treatment will be less invasive and help protein production over his whole body (whereas the spinal taps focused mostly on the lower body). Spinraza treatment only recently came available in Canada in 2017 - the first of its kind for SMA. We are extremely thankful to have been able to access Spinraza and continue with the oral treatment as they will help stop the regression of Jaxons nerves. We still don’t know how many nerves Jaxon has lost and once nerves die you're not able to get them back. Without treatment, Jaxon would have continued declining and losing nerves to the point where he would need a wheelchair for the rest of his life with possible eating and respiratory issues.

In addition to the medication, Jaxon will require intensive physical therapy as this is essential for his progression in motor development. With SMA, it makes it hard to build muscle with missing nerve connections. We are currently going to therapy appointments 2-3 times/week. We are hoping to start therapy intensive session blocks in the next month or so, which typically require 3-5 physio appointments/week, sometimes twice daily. Weekly maintenance sessions will also be necessary between these appointment blocks.

Jaxon has made great progress since he started his treatments and physio! Prior to treatment, he was able to sit for a few seconds but was hardly able to move his legs or lift his arms above his head. He is now almost able to stand with hand support, take steps with much assistance, roll, and lift his legs and arms! However, he is still not able to crawl, hold himself with the ability to coordinate the crawling, or get from a lying to sitting position. With further intensive physiotherapy, we do believe he will make it to crawling and walking. While we don’t know if he'll be able to walk independently or with a walker/assistive device, we do know that physio is the key!

Unfortunately, the intensive physiotherapy that Jaxon needs isn’t covered and our personal benefits reach their cap in under a month. Jaxon’s physio appointments cost $130/hour. We are estimating a cost of around $10,000-$15,000 for the first year. We do anticipate this to go down as he gets older, but his physiotherapy costs will likely be thousands of dollars for the next couple of years.

In addition to therapy, some of Jaxon’s equipment loans and trials are nearing the end and we will have to look into getting our own. While a portion is covered by the government, we will need to cover the remainder of the costs.The daily equipment he currently uses is a little wheel chair to get around, fully supported assisted walker, stander to work his leg muscles, compression vest to prompt him to use his core muscles, and special braces for his ankles as his ankles are not strong enough to support him to stand.

Water therapy has also been proven to be the most beneficial of the therapies to help kids with SMA as they are able to move and exercise without the weight of gravity and get the full range of motion. The pandemic has proven even more difficult to access water therapy through hydrotherapy pools for Jaxon. We are looking into purchasing a hydrotherapy pool so that we can more easily accommodate this treatment in our already therapy-intensive schedule. Since Jaxon will need to keep up physio exercises for likely the rest of his life, we feel investing in one would be very beneficial for him to ensure easy access to further expand on his physio appointments while at home. Our quotes have been estimated at $40,000.

Apart from God’s grace, we would have no strength to get through all these challenges. We are thankful for all the ways we’ve learned to advocate for and find the necessary treatments to help our son grow and develop.

Feel free to follow Jaxon's journey on Instagram: @jaxonsjourney91
Information on direct donations to the family can be found on their Instagram profile. 

Your prayers and support are greatly appreciated!

Emmanuel & Laura Gwayumba