Originally posted on smiles and duct tape:
Are there any GOOD ALD stories? I guess we need to define the word GOOD. good /ɡo͝od/ adjective 1. to be desired or approved of. “a good quality of life” ? Jack (THIS is ALD #1), as a GOOD ALD story. He’s happy and can walk and see…
Originally posted on smiles and duct tape:
It’s been a while since I’ve shared a THIS is ALD story, so I reached out to our ALD community. Within a few minutes I heard from several families willing to share their stories. The first is from Kiomara. THIS is ALD #22 — Alexis, Gerald and Jacob.…
Originally posted on smiles and duct tape:
I have known Kerry for many years through social media. We both have sons named Jack and we both know how ALD can effect every inch of every life in an entire family – even when it only takes over one body. Thank you Kerry for sharing Jack’s…
Originally posted on smiles and duct tape:
? When I reached out to the ALD community to share their THIS is ALD stories it’s mostly been mothers who have responded. I appreciate all of the input from mothers, but I’ve been wondering about the rest of the family. When ALD strikes, it doesn’t just strike…
Originally posted on smiles and duct tape:
My name is Kim and I’m the oldest of four children. I have 3 brothers. Angel , Cesar, and Alan. My brothers were all born healthy. Until 2016 nobody knew this horrible disease ran in the family. December, 2015 my mom started noticing changes in my brother Alan…
Originally posted on smiles and duct tape:
ALD is a horrible disease that can take on many different forms. This family’s story is fascinating because it has clearly been present in their family for some time without symptoms that you might expect. ? THIS is ALD #15 — Kayden and Braxton We welcomed our beautiful…
Originally posted on smiles and duct tape:
Last fall I went to an ALD symposium with several other families effected by our disease. Among the group was a couple, John and Kathy. I learned quickly that they had recently lost their son, Blake. I was shocked that just four months after losing their son, they…
Originally posted on smiles and duct tape:
By now I hope you are starting to understand Adrenoleukodystrophy (ALD). If you know our family or have followed Smiles and Duct Tape for a while, you know what ALD looks like for Jack. THIS is ALD has hopefully helped you to better understand what the disease looks…
Originally posted on smiles and duct tape:
? THIS is ALD is gaining some traction. Not just in the ALD world, but I’ve heard from many non-ALD folks that they are appreciating learning more about the disease. ALD can look very different person to person. Here’s a story about a boy named Nicholas. Another success…
Originally posted on smiles and duct tape:
Another ALD story to share, and this one is a little different. This is a new story for ALD –hopefully the future of our disease. It’s a story about a boy, newborn screening, and a bright future. Meet Donovan. THIS is ALD #6 — Donovan My son, Donovan, was…
THIS is ALD 