Kaysens Quest

Kaysen’s Quest

Kaysen is a happy, smiley toddler that has been diagnosed with a devastating disease called Spinal Muscular Atrophy.  SMA is a rare neuromuscular disorder that affects the voluntary muscles used for activities such as head and neck control, crawling, walking, swallowing and breathing.  His classification is Type 1, the most extreme form of this illness. Most children diagnosed with Type 1 generally do not live beyond 2 years old without treatment.

Zolgensmas can help stop the progression of this aggressive, degenerative condition. The current cost of treatment is 2.8 million dollars and is a one time treatment compared to the 4 injections of Spinraza he currently receives every year that requires sedation and painful spinal injections - that he will need for the rest of his life. Spinraza also comes at a huge cost. 


Kaysen needs donations so he can continue to live through each milestone in his life. There are several medical costs associated with SMA. He will need mobility aids and various treatments throughout his life. Donations would be greatly appreciated to help Kaysen live the best life possible. Be sure to follow Kaysen’s Quest to follow along on his journey through Facebook and Instagram.  Thank you so much for your support.


Please continue to read below to understand Kaysen’s full story as well as information on this disease and the treatment drug.


Kaysen the Rainbow Baby:

Lana’s calling in life has always been to be a mother as she has always been a natural with babies and kids of all ages. She looked forward to the day when she would meet the right man and could fulfill her life as a mom. The chance came when she met her now husband, Mark. Mark and Lana struggled for years with countless miscarriages and were eventually diagnosed with unexplained fertility issues. Accepting this heartbreaking fate they planned to have IVF in order to have a child of their own. Unexpectedly, Lana became pregnant again in 2017. This time their prayers had been answered and the pregnancy continued further than their previous losses. Although a high risk pregnancy with many struggles along the way, Lana gave birth to Kaysen on July 17, 2018. Their rainbow baby had finally arrived and Lana and Mark were over the moon. Their life with a new baby started off as normal as expected.


However as time went on, Lana and Mark were starting to notice that Kaysen wasn’t quite hitting all the milestones that babies his age should; holding his head up for tummy time, rolling over and even sitting on his own. At his 6 month check-up the Pediatrician told Lana and Mark that along with the issues they had already noticed, Kaysen lacked the gross motor skills of someone else his age. A possible diagnosis at this time was Torticollis-an abnormal head or neck position. Kaysen began going to physiotherapy and seeing a chiropractor to help correct these problems. Just after he turned 7 months old Kaysen went to see the doctor again due to lingering chest congestion. It was then while listening to his lungs the doctor noticed his tongue was flickering; this was a warning sign. The Pediatrician decided it was best to refer Kaysen to a Neurologist based on all his symptoms. At the Neurologist appointment 2 weeks later Kaysen underwent 2 specific nerve tests; he failed both. At this point the specialist told Lana and Mark that based on everything she had seen Kaysen was demonstrating signs of Spinal Muscular Atrophy. He was then sent for genetic blood work to confirm this potential diagnosis. The waiting period for the results was agony. A week and a half later on March 19, Lana and Mark receive the devastating news; Kaysen had tested positive for Spinal Muscular Atrophy Type 1.


This news brought their world crashing down. The Neurologist explained there was only one possible treatment for Kaysen, the drug Spinraza. This drug is proven to be effective at slowing, stopping and even potentially reversing the symptoms of SMA. This was exciting news for Lana and Mark, until the cost of the medication was revealed; each treatment is $25,000. Kaysen required 4 initial treatments followed by 1 treatment a month for the rest of his life. Neither Lana nor Mark’s benefits cover any cost of this drug and they were unsure how they would be able to afford these treatments. The Neurologist said there was a potential option to get part of the drug covered. They were ecstatic about this news but also did not want to get their hopes up. They immediately applied for this coverage but it was soon discovered that it takes 4 months to get approved.

This was very disappointing to hear as Kaysen needed to get the 4 initial treatments as soon as possible, as every day means further progression of the disease. At their next Neurologist appointment the doctor informed them of another kind of coverage they would potentially qualify for. Again their doctor helped them apply for this coverage which is based on medical condition and financial need. This time their prayers were answered; they heard back days later and were approved for full coverage. This meant that Kaysen would get his initial 4 doses fully covered but with a few extra costs Lana and Mark will have to pay.

Every year they have to re-apply for this funding in the hopes that his treatments will still be covered.

Recently a new gene therapy, called Zolgensma was created and approved for use in the United States. This is a one-time treatment that would stop the progression of SMA1. The drug's cost is 2.8 million dollars.  The drug company has applied to Health Canada for approval for use in Canada. Kaysen has received Special Access to Zolgensma and now does not need to wait for the drug to be approved before he can have it. 

If the family can raise 2.8 million dollars, Kaysen will be able to receive this life altering gene therapy. We are asking for your help. We have just days to raise an insurmountable amount of money. 

Kaysen will have continual and lifelong appointments with the Neurologist, Lung Specialist, Dietician, Speech Language Pathologist and many other rehabilitation staff to monitor and maintain this disease.  Donations are needed to cover all extra costs associated with SMA. 


Please follow “Kaysen’s Quest” on Facebook and Instagram for updates about his progress.


What is Spinal Muscular Atrophy?

Spinal Muscular Atrophy is a rare genetic disease affecting the part of the nervous system that controls voluntary muscle movement. It is caused by a loss of specialized nerve cells (motor neurons) that are found in the spine cord. This loss causes muscle weakness making it difficult to control head movement, sit, stand, walk, breathe and even swallow. SMA is the leading genetic cause of death among infants.


Classifications:

Type 1 (Infantile)-Most severe form; 60% of those with SMA have this type Symptoms are usually evident by the time the child is 6 months and include difficulty holding up their head, cannot sit unsupported, inability to bear weight on their legs, weakened limb movement, reduced muscle tone, lack of reflexes, tremors, difficulty swallowing or feeding and impaired breathing. Most generally do not survive past the age or 2 due to respiratory failure.


Type 2 (Intermediate)-Symptoms usually show up between 6 and 18 months of age. Many are able to sit without support but cannot stand or walk without assistance. Spinal curvatures are common and they have some respiratory difficulties. The life expectancy varies with some living into adolescence and even young adulthood.


Type 3 (Juvenile)-Symptoms usually appear between 2 and 17 years old and include abnormal gait as well as difficulty running, climbing stairs or changing levels. They often have a fine tremor of their fingers and lower extremities can continue to be affected.


Type 4 (Adulthood)-Least common form with symptoms typically appearing after the age 35. Characterized by a slow loss of motor function overtime including general muscle weakness, trembling, twitching and potential minor respiratory difficulties.


It is estimated that 1 in 40 people are genetic carriers of the disease, meaning they carry the mutated gene but do not have the actual disorder. In order for someone to have SMA, both parents would need to be carriers. Even then, the chance is only 1 in 4 that they would be born with the disorder. Approximately only 1 in 6000 are births occur with this disease. It is estimated that only 500 people in the country have this disease, 12 of them living in Alberta.

Please donate today. Your contribution will help Kaysen with current medical costs. Future coverage and expenses is unknown for Kaysen so your assistance will prove helpful for future medical bills as well.

Please follow “Kaysen’s Quest” on Facebook and Instagram to see how your donation is helping to improve Kaysen’s life.