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Gideon Arthur Hein was born on May 12, 2021. It was a smooth delivery following a healthy, uneventful pregnancy. He was a seemingly healthy 8lb13oz baby boy.

The problems started around 5 weeks, when we first started noticing that Gideon stopped meeting milestones. Our family doctor assured us that it was normal, Gideon was just a big baby and meeting milestones late is common for bigger babies.

When Gideon was 2 months, he stopped latching to breastfeed. In order to keep him fed we switched to bottles and pumping. On top of this not only was Gideon still not meeting milestones, we were starting to notice some loss of movement. Again, our doctor assured us nothing was wrong, bottle feeding is easier than breastfeeding so Gideon had just gotten lazy while feeding and his muscle hadn’t caught up with his growth yet. Gideon is our first child, so we didn’t know any better. I wrote off the feeling in my gut as postpartum anxiety, and we trusted the doctor.

We continued to bring Gideon every month for the next 4 months because of continued loss of motor function. He was moving less, still couldn’t hold his head up, was starting to talk less, and was starting to have increased trouble bottle feeding. Despite all of this, our family doctor still refused to acknowledge that anything was wrong. It was finally on the 6 month visit, after he tried to dismiss us again, that I stood my ground and told him I wasn't leaving the office until he wrote us a referral for a pediatrician.

We saw the pediatrician 2 weeks later, at the end of November, and he had us take Gideon for some blood work and some x-rays. When the results came back and didn't give us any answers the pediatrician had us admitted to Jim Pattison Children’s Hospital on December 20th in the hopes of speeding up the diagnosis process.

2 days after Gideon’s admission was the first time we heard about Spinal Muscular Atrophy, a rare genetic degenerative disease affecting about 1 in 10,000 people that causes the deterioration of muscles as the body's motor neurons die due to the deletion of the SMN1 gene. The doctors couldn't confirm a diagnosis until genetic testing was done, but they were certain the results would come back positive for SMA. Gideon had an NG tube put in on December 23rd after it was discovered he had aspiration pneumonia in his lungs from fluid going down the wrong tube while he was eating. While our family doctor was sending us home telling us nothing was wrong, Gideon was choking silently because he wasn't able to swallow properly.

We stayed in the hospital until January 14th, when the genetic test results finally came back confirming the doctors fears of SMA. During our stay in the hospital Gideon started sleeping using a BiPAP machine, and we were shown how to operate all the new equipment we were going to be sent home with.

Our last day in the hospital, Jan. 14th, Gideon received his first dose of life saving medication. Spinraza, a medication costing 180K per dose and given every 4 months for the rest of the recipients life following 3 loading doses, targets the bodies secondary motor neuron producing gene called the SMN2 gene, and it helps boost the amount of functioning neurons this gene produces thus stopping the progression of muscle loss and saving our baby boy.

Adjusting to life at home was hard, but we are very blessed with an amazing support system to help us and hold us up along the way. Gideon received the 3 loading doses of Spinraza over the next month before we found out that we had been approved to receive funding for a gene therapy treatment called Zolgensma. Zolgensma is a one time treatment costing nearly $3million, and it inserts a copy of the deleted SMN1 gene that Gideon was missing. Gideon was treated with Zolgensma on March 2nd, 2021. Without these treatments, Gideon most likely wouldn't have made it past his first birthday. We will forever be grateful for the doctors who fought for our son and advocated for us to have access to the funding we needed for gene therapy.

Gideon is now 17 months, and since treatment it has been a slow recovery, but a steady one. Gideon has started talking again and won’t hold back if he's got something to say. He has started rolling from his side onto his back, and he can hold his knees up when he’s laying on his back. These all sound like small things, but they really are huge for us. He just continues to get stronger!

Gideon means mighty warrior, and Arthur means strong man. When we chose these names for our son we never could have imagined how true they would be for him. Gideon really is one of the strongest and bravest kids that I know. Nothing comes easy for him, but he continues to fight and never lets it steal his joy. We are so blessed to be able to continue watching our son grow, and to get to love him every day he’s here. Definitely worth every cent of the $3million!

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