Benny (left) Josh (center) and little brother Evan (Right) with their parents, Jennie and Gary
The past few weeks have been bittersweet. It was Benny’s 4th birthday 2 weeks ago, and this week is Josh’s third birthday. I didn’t need a reminder of how fragile they are, but we got one anyway. I try so hard as a mother to think of the “normal” things that other children get to do, and I try to give it to them. It’s so easy to get wrapped up in their day to day care, therapies, and appointments. I don’t want the simple pleasures of childhood to get lost.
Last week we spent two beautiful summer days in the park with them. We took them on the slide. We put them on the swings. We let their feet feel the water of the sprinkler. They delighted in watching the other children run around them, bounce balls, throw water balloons, and blow bubbles. Curious children took an interest in them, spoke to them, asked us questions, and spent time with them. One even tried to follow us as we left to go home, chanting, “I want them to stay” over and over. I told the little girl we’d come back again tomorrow… but tomorrow in the park didn’t come. The heat had worn Benny out and he began to have seizures and was vomiting by evening. The next day, it had gotten to Josh. He was vomiting and listless. By the evening Josh was on an IV drip and too weak to drink. They had gone from laughing in the sunshine to a rapid decline. Everything fell apart so fast. The rest of the week was spent indoors, monitoring them all day and throughout the night. Changing the bags of Benny’s G-tube pump, and Josh’s IV bag, both slowly dripping hydration back into their fragile bodies. Making sure to move them carefully so as not to induce any more vomiting. Massaging their limbs as their muscles became spastic and they got “stuck” in uncomfortable positions. And worrying… lots of worrying… I still don’t know how long it will be until they recover and are “back to themselves”.
We had been planning to celebrate their birthdays this Sunday, and I wasn’t sure they’d be up to it. But we made it. They are still in a very fragile state, still not yet back to themselves, so I was feeling anxious about their being outside again in the sunshine. Yet there we were, back in the park… with an intimate group of caregivers (who are now close friends) & family who joined us to celebrate with the boys.
We made it another year, another birthday. We celebrate that we’ve come this far, but I also mourn. I mourn another year of the progression of this disease that steals the life from them. A disease that steals their ability to have simple childhood pleasures, like going to the park on a summer’s day.
I can’t erase our fragile reality, but I can hold fast onto hope. Hope that god willing, they will soon receive treatment. That next year we can celebrate their birthdays without also having to mourn the progression of the disease.
We’re still waiting for word from the FDA and hope that when we get word (by week’s end) that we’ll have a clear idea of what the FDA would like to see and that we’ll be able to proceed with the trial soon.
We are still in need of funds for the clinical (hospital) costs for the gene therapy treatment. Benny turned 4 on June 27, 2016, and Josh turns 3 on July 16, 2017.
Please consider giving Benny and Josh a birthday gift, by making a tax-deductible donation to “Cure Canavan Fund” in their honor.
With Love and Gratitude, Jennie and Gary Checks can be mailed to Cure Canavan Fund 2920 Ave R Suite 327 Brooklyn, NY 11229 Cure Canavan Fund is a registered non-profit 501C3. All donations are tax deductible. EIN# 83-4489648