- C
Hi all, for those who don’t know us, we are starting this GoFundMe for our 1 year old daughter’s medical alert service dog’s training cost. Here’s a little bit of our story so you’ll know why this dog is important to us. We are a family of 5 who lived a normal life until the birth of our second child, Beckham in 2020. Beckham was a seemingly healthy infant besides being a little extra sleepy, until something didn’t seem right. When he was 6 wks old he was hospitalized for breathing difficulties. That’s when we began to investigate more. He was aspirating, he was floppy, he was delayed, a whole slew of things began to unravel. I’ll never forget the day the nurse with genetics told me, “just make sure he doesn’t go into a coma..” due to some of his labs. After years of tests, brain scans and surgeries he had been diagnosed with cerebral palsy, hypotonia, eosinophilic esophagitis, mitochondrial disease, possible inborn error of metabolism, mass on his pineal gland, white matter loss and failure to thrive resulting in the placement of a gastrostomy tube, and multiple other secondary diagnosis. In 2023 we learned that he was also going into ketosis with stress or illness which sent us to the ER for care almost every time it happened since no one knew how to care for it and get him out of ketosis. We end up telling the doctors what he needs and have even had a doctor release my kids from their care stating, “I’m learning more from you than you are getting from me”.
Fall of 2023 we had our youngest child, Andi Rose. She seemed to follow a very similar pattern as Beckham and we proceeded to have her tested and she also has the same Mitochondrial variant as Beckham. The difference with her is that when Beckham’s metabolic labs are “off” he is symptomatic, we know when he is going into ketosis, he becomes lethargic and vomits, whereas Andi is not. So her ketones can be extremely high, doing damage, and we have no idea. In fact the last time we brought her to the ER for elevated ketones the nurse saw her blood ph levels and said, I’m so glad you brought her in when you did. She was going into metabolic acidosis, by looking at her you would have never known. Metabolic acidosis, or more specifically for her, non-diabetic ketoacidosis, can be very dangerous if not treated quickly. It’s not the same as when a person is dieting and intentionally going into ketosis. Their dr refers to them as “bad ketones” since every time they rise they are damaging their bodies. Without knowing why it happens and mitochondrial disease having no cure, this is something that is inevitably going to continue throughout their entire life.
We saw one day where some friends had a litter of doodle puppies. I didn’t want a dog, but Andi had just come out of the hospital from a really rough metabolic episode and it almost seemed like too perfect of timing. I told my husband, we can get the dog if we train her to be Andi’s alert dog. We had absolutely no idea who would train her, how we would afford it or where to begin, but we jumped. We saw a way to change her life and went for it. We got this precious puppy who immediately grew attached to our Andi.
We found a trainer and began training and realized quickly how smart and intuitive this puppy was and realized we made the right choice. I began selling cakes to attempt to offset the cost of the training. Those took off, I was making so many cakes. Then we hit a season of busyness where making cakes between multiple Dr appointments (sometimes 10-12 doctor appointments in one month), weekly dog training appointments, therapies and trips to specialists multiple hours away just isn’t feasible.
It’s really difficult to be on this side of things, making an account like this, doing everything imaginable to make sure your child’s life is just a little simpler and more accessible. I’m blown away at the support and love we have received over the past 4 years. But if you’re familiar with mitochondrial disease or metabolic diseases and understand the progression they have, it’s probably clear how important this puppy is to our family as a whole, not just Andi but Beckham as well. She is our family now, she will look after, care for, love on and respond to many of their needs for her entire life and that’s an enormous ask of her. This gives us freedom to leave our kids with other caregivers for dates without worry, to sleep better at night without thinking something might be wrong, send Andi to school, live day to day without the constant worry and stress of checking her blood, let our kids be kids. If you read this far, thank you. It’s only a glimpse of my kid’s stories and I know there is healing on the other side of all of this. If you want to learn more about mitochondrial and metabolic diseases, I have attached a link. Our kid’s variant has not been seen before so there’s no one recorded to know how the disease will look as they age, so while we don’t know what their future might look like, we do know who holds their future.
Here’s to the many adventures of Andi & Remi ❤️