Child Spotlight: Harper
1. Please introduce your child and list the name of their diagnosis
This sassy, red headed girl is two year old, Harper. She was born with a rare genetic disease called Spinal Muscular Atrophy (SMA) type 1. This disease is a muscle weakening disease that robs people of their physical strength by destroying the motor neuron cells in brain stem and spinal cord. This leads to difficultly walking, breathing and independently eating. Historically, it has been the leading cause of infant death for children under the age of two.
As of 2021, there have been three treatments approved for SMA, giving Harper the ability to exceed her life expectancy. One of these drugs is a ground breaking gene therapy considered the most expensive drug in the world ringing in at 2.8 million dollars CAD. After initiating a fundraising campaign, a generous anonymous donor and ultimately winning a drug lottery, Harper was dosed with the medication called Zolgensma in December of 2020.
2. Tell us how this diagnosis affects Harper and your family’s day-to-day life.
Having SMA does not affect anyone’s cognitive ability but does touch every single muscle in Harper’s wee body. We feel fortunate that Harper is orally fed and not on breathing assistance, which is common for kiddos with SMA, but has severe muscle weakness in most of her body. At two, she does not walk, roll, crawl or is able to transition to sitting on her own. Our girl is regularly supported with therapy and uses her new “legs” (or wheelchair) to get around.
With a child in a wheelchair, adaptability has been a new focus for us. Harper NEEDS flat surfaces and ramps to be included and it is something that we have to be diligent of as a family in order for her to join in on the fun.
3. What have you learned from your child and being her parent?
In our case, I have learned that you don’t need muscles to show strength. This girl has taught us that if she has strength, we have strength to fight for her each and every day.
When you have a sick child that needs a treatment that costs more than you’ll ever make in your lifetime, you’ll fill your days with every single fundraiser even if you are running on fumes. You will find every loophole in the system and you will have more drive and determination then you ever knew you had. Putting our lives on display for the world humbled us. The generosity from the community is something that we will never forget during one of our lowest seasons to date. A simple thank you wasn’t enough but during this year, it was all that we had to give back in a year of complete desperation.
4. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?
Oh man, I would say don’t hop on google! Instead, find all the Facebook groups to see what is actually happening in that community. With modern medicines, sometimes it’s much different then what the disease historically looked like.
Secondly, take time to grieve. ALL the time to grieve. Remember grief comes in waves and its okay to feel those feelings. Diagnosis can be a huge life change and it takes time to digest the new information and lifestyle that will now effect your life.
If there’s any other tid bit of advice, I would say make sure you find a great medical team that supports you on your journey. It’s okay to remove a member if you feel like they don’t have your child’s best interest at heart.