RYAN & LAELA BALDOMERO

Forever Ages: Laela passed away September 2018 at 11; Ryan passed away February 2020 at 15

Home State: Louisiana

Diagnosis Date: Ryan – December 2009; Laela – February 2010

Sanfilippo Type: MPS IIIA

Parents: Eddie and Allison

Siblings: Jalen, Justin, and Keaton

What it felt like when we learned our children have Sanfilippo Syndrome…

It was devastating to say the least. However, it was a long time before we fully processed it, I think. Once reality set in, we were full of so much hope and promise for treatment for Ryan and Laela. While treatment or cure didn’t come for Ryan and Laela on earth, we still have high hopes for the future of Sanfilippo treatment.

What our children loved the most was …

Ryan loved all things sports! He would watch any sport so intently, and loved every second. He had a funny love for any and all hardback novel-type books. He just loved to carry them around with him and show people, even strangers, “a Booook.” Can’t forget his love of trampolines! Or “jump jump,” as he would say. But perhaps the best and most-memorable thing that Ryan loved most was collared shirts. Ha! He would try to wear several at a time and there was never one he didn’t love. Silly boy!

Laela was a huge lover of all things girly! Since she was a baby, if it was pink or sparkly, it must surely be hers. She loved the sunshine. She was known to find a sunny spot in the floor and stretch out in it. She loved music so much! For the longest time she had a toy “boombox” that she carried around held up to her ear everywhere she went. Laela was hilarious. She was always good for a laugh and she’d join you with the biggest, fullest laugh you’ve ever heard.

What I can say they both loved most was just life. They were the absolute happiest human beings I’ve ever encountered in my entire life. Nothing got them down. There was always something to smile or laugh about in their eyes. We feel so fortunate to have been given the gift of seeing the world through their joy-filled eyes.

How has Sanfilippo affected our entire family?

Sanfilippo certainly made life challenging at times, for our family. But honestly, we are all most affected by the lessons we learned from life with Ryan and Laela. Our other children, as well as ourselves, we feel lucky to have been able to learn such large lessons, such as living each day fully. Never putting life off for tomorrow. Our other children learned patience and forgiveness very early. They learned, as young children, how to be compassionate to others and to always have an open mind and heart for those who need a little extra help. We, as parents, learned those lessons as well, along with what it feels like to love so big every day because you know that you’re on borrowed time.

The hardest part of being a Sanfilippo parent is …

The loss. Easily the loss. The loss of freedom to go out as a family, the loss of “normal,” the loss of friendships, the loss of our other children having sibling playmates but instead turning into caretakers.

And ultimately, the loss of our children. We start to lose them slowly which goes on for many years, if we’re lucky. I say lucky, because although it’s heart-wrenching to witness them fading away, they are still with us. So we consider ourselves lucky.

Until they aren’t. One day, they leave us. Sanfilippo takes them away from this earth and from our arms. That is THE absolute hardest part. No question.

If we could ask just one thing from the world/people, it would be …

Acceptance. True acceptance.

It’s often said that special needs children, Sanfilippo included, are accepted by someone, some place, etc. But most often it’s not a genuine true acceptance. It’s an acceptance that is comfortable. Once we as a society have to leave our comfort zone, we no longer wish to accept what has made us feel uncomfortable, in this case Sanfilippo children and families. Sanfilippo isn’t easy, not for anyone. It’s terribly hard. Acceptance of our children, their needs, however big, and our family, that would be the one thing we’d ask for.

Why are we asking you to donate to Cure Sanfilippo Foundation?

Simple. A cure. It’s within reach. It’s possible. The biggest hurdle is funding. With funding we can gain so much more ground towards treatment and ultimately a cure.

Our hope and prayer is to raise funding so that when given the news of Sanfilippo, parents will also immediately receive a plan for treatment or cure. We know it’s possible. We just have to keep fighting.