Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 21 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, the gift Auni was to them, and the joy she brought to their lives.
Receiving a SMA Diagnosis
When Auni was about four months old, her parents noticed something was wrong. She couldn’t sit up or support her weight at all. After doing a Google search, Dallin and Caitlin guessed she had SMA. When she was seven months old, they had Auni’s physical abilities tested and their fear was confirmed, Auni had SMA.
Spinal Muscular Atrophy is a Fatal Disease
When Caitlin and Dallin discovered their daughter’s condition was fatal, they were devastated, as any parent would be. The statistics claim 50% don’t live past their first birthday and 90% don’t make it past their second birthday.
On the way home from the doctor’s, Auni was happily babbling in the backseat while her parents silently cried. Receiving this kind of news is hard to process, which is why they relied on the support of friends, family, and other resources.
The Hardest Part about Daughter’s SMA Diagnosis
Dallin said the hardest part about watching Auni and her disease was seeing her become physically weaker. She lost the ability to do things such as roll over and hold her head up. Eventually, Dallin and Caitlin couldn’t even sit her upright because it became too hard for her to breathe.
SMA kids are mentally unaffected by their condition. Dallin says, “Mentally, she was growing like any toddler would and we could have that relationship. But her body was breaking down.”
Caitlin said for her the most difficult part of Auni’s diagnosis was all the medical equipment she needed to learn to use. She felt a lot of stress trying to learn how to do everything right, especially with Auni’s breathing treatments.
Children with SMA have breathing problems where they will suddenly stop breathing. Parents need to be prepared for those situations, regardless of where it happens.
With the Sad, Comes the Joy
“She was so happy through everything,” Auni mom said. Despite how difficult and stressful it was to be Auni’s mom, Caitlin appreciated the impact Auni had on her and everyone she came in contact with. That positivity is something Caitlin will always remember.
Dallin said each day was a gift, “Every day that you get to spend with a child, I think, is special. But especially if their days are numbered.” If every parent had this perspective with their kids, each child would know without a doubt, that they are loved.
Sharing Your Experiences Helps
When Auni was diagnosed, everyone, their family, and their community rallied around to support. Caitlin and Dallin were so grateful for the support and fundraisers and wanted everyone to know Auni. There was one problem. Auni had breathing problems, and could not go out in public. A common cold could be life-threatening to her.
Social media became a great way to express their gratitude and update everyone on Auni’s health and milestones.
“Early on, we’d kind of hide the hard days,” said Dallin. Once they started sharing good and bad days, people started to really relate and increase support and interest in Auni and their family.
For the longest time, they felt they had to put a smile on and pretend everything was okay. Once they began sharing the bad in addition to the good, it helped “release” frustrations, worry, and sadness.
Parents share tips if Child has been Diagnosed with SMA
When you find out your child has a terminal condition, the only thing you can think of is: knowing your child will die but not knowing when. This thought can become a constant fog preventing parents from feeling every day. Caitlin tells parents in her situation, “it gets better’. It will take time to recognize happy moments again, but once you do, don’t take those moments for granted.
Dallin tells parents to talk with doctors, therapists, and other parents who have a child with SMA. Knowing your options and having an idea of what to expect can go a long way when you have to make difficult medical decisions.
Knowing your child’s physical abilities will deteriorate more, and more until death, it is important to decide what you will do as far as life-saving measures. Their bodies become so frail and CPR could do more harm than good. Make these type of decisions in advance, instead of at that moment.
What Parents, Learn from Child with SMA
“Through it all, even losing her, we’d want her back in like two seconds if you could. But the people we are today is because we had Auni and went through all we did,” said Caitlin. Because of Auni, Caitlin and Dallin have a greater appreciation for life. They tell other parents, anyone who can appreciate what a parent with SMA child goes through would say no matter life’s outcome – it is all worth the while.