Zion was born in Tanzania, at a chubby 8 lbs 3 oz. However, he had an episode of hypoglycemia shortly after birth and was rushed to the NICU where he stayed - the largest baby, surrounded by lots of tiny preemies - for a week.

Doctors didn't find any cause for the drop in blood sugar, so we were released with instructions to closely monitor his weight.

We continued with extra check-ups, but he wasn't gaining weight as a newborn should be.

And, he was jaundiced - severely jaundiced. While it wasn't obvious on his skin that he was yellow, blood tests showed that Zion had 500 times the normal amount of bilirubin in his body.

At 6 weeks old, our doctor told us to take him to a more advanced hospital, since this was an indication of something serious.

We traveled to Europe and were soon transferred to one of the best pediatric hospitals in the world. Testing continued for weeks and weeks, until one morning a team of endocrinologists came in our little hospital room. They explained that Zion has an ectopic pituitary gland, and diagnosed him with panhypopituitarism.

He started on steroids that morning and we saw immediate improvement. This diagnosis also explained why Zion had hypoglycemia shortly after birth, why he couldn't gain weight and was not growing.

As a new mom, I felt completely overwhelmed with the news. I'd never even heard of a pituitary before that morning, and now I was learning what it was and that my son was going to be on medication for the rest of his life. I felt so joyful that we finally had an answer, but also so devastated that treatment would be life-long. I didn't know any other families (besides our neighbors in the hospital ward) with children who were steroid dependent; the situation felt frightening and full of so many unknowns.

The doctors told me that Zion should start growth hormones when he was 6 months old, and frankly, I was terrified about giving him a nightly injection. I knew I could give him an emergency injection if needed - but an injection Every. Single. Night? That felt like a huge obstacle.

Growth hormones became available in Kenya a few weeks before Zion turned 6 months old. We received our shipment and I opened the Norditropin box with shaking hands. The first night, Zion and I both cried after his injection. I felt like the worst mom, causing my son pain. But after that first day, every day was easier. Soon, we started doing his GH injection in his sleep, and this got us through the first two years of growth hormone therapy.

When I was told Zion's diagnosis, I thought that this was going to affect him being able to live a normal life; we would never be able to go camping, be away from electricity or too far from a modern health clinic, in case he had a crisis. I worried that his steroid schedule of hydrocortisone, thyroid meds and growth hormones would mean he wouldn't be able to enjoy regular school or other events as he grew up. And, I worried about the local hospital staff being able to deal with his health needs.

But I'm happy to say, I was wrong!

Zion's pediatrician made an alert on top of his electronic file, so the nurses know exactly what to do. We've had a few crises over the years, but the staff at our local hospital have been proficient and professional each and every time. Zion's endocrinologist wrote us an emergency waiting letter that we present upon arrival at the hospital and treatment has always been immediate.

Zion attends a half-day preschool that he loves. I chose one with an understanding administrator and a low student-to-teacher ratio. Zion's backpack has a label for emergency protocols and all school staff know to call me in case of any concerns.

When Zion was 18 months old, we went camping for the first time. Now, we go camping around two times a year. We use a mini cooler to keep his growth hormones cold, and have Zion registered for an air ambulance, just in case he has a crisis when we are near Mount Kilimanjaro or in a national park.

We use the cooler every time we travel, and this past year, there were power shortages. A few times we worried about our fridge getting too warm for Zion's meds, so, we brought out the mini cooler and packed it with ice until the electricity returned (too bad we had to throw out all the milk and cheese, though).

Over the past four years we've traveled with Zion to: Zanzibar, England, USA, France, Portugal, Kenya and Seychelles. We always ensure the hotel or home we rent has a working fridge for his growth hormones and get adequate travel insurance (so far, we've never needed it!).

Now, Zion is almost five years old and we call his growth hormone injection his 'poke'. His time to watch videos each evening is also the time he gets his injection, so sometimes he asks "Can I get my poke now?" because he knows it means he can watch his favorite show, too. There are no more tears before a growth hormone injection these days, and we don't have to do it while he is sleeping, either.

Growth hormones are still not available in Tanzania. We continue to source ours from abroad.

But, when I look back at how far Zion has come - from the NICU to Europe to get a diagnosis, from those first difficult nightly injections to a regular routine, from a sick little baby to a thriving pre-schooler, I am reminded that all our efforts are worth it.

Zion is growing, and his example is going to pave a way for Tanzanian kids in the future: for creative ways to keep growth hormones cold, how to adapt to getting a nightly injection, to the firm reminder that you can continue to live a normal life and pursue adventures, even with a health condition.

Growth hormone therapy has made Zion - and me - stronger and braver than I ever knew we could be.