Where there's a WILL, there's a way! William has early infantile onset Krabbe Leukodystrophy. William is the son of Robert and Abbey (Glasgow) Branch.
He had a stem cell transplant at 5 months old to slow the progression of the disease. He was diagnosed with Krabbe Leukodystrophy at the age of 5 months old. Krabbe is a tragic, progressive terminal genetic disorder. The only treatment at this time is a stem cell transplant that needs to be caught at birth, but most do not know until its too late for treatment. Learn more about Newborn Screening at www.huntershope.org. We are here to educate and share our story.
11/20/2025
Our first Christmas ornament of the year! Thank you, Hunter's Hope Foundation, for the gift!
We have several trees ready to be planted this fall on our property, but we saved this little spruce to be used as our family Christmas tree this winter, then we'll plant her next year when she's a bit bigger. 🌲💙❤️
I designed this William's Way logo seen on this ornament for a fundraiser for Hunter's Hope. You can purchase hoodies, hats, all sorts of things, with his logo to support Krabbe Families. ❤️ Our WW Line is on the last pages of the LCN Family Collection by following this link ⤵️. I personally love the little tote bag! https://buh1wm-1c.myshopify.com/collections/lcn-family-collection?page=53
Have a Happy Thursday! 🍂 🍁 Love to all! -Abbey (William's mama)
11/18/2025
Hope to see our Leukodystrophy family there (can you find us in the pic below?) We love going to this conference. ❤️❤️❤️. Register and book your rooms soon!
United Leukodystrophy Foundation
KrabbeConnect
✨ Save the Date! ✨
We’re excited to announce the 2026 KrabbeConnect Family Warrior Meeting in collaboration with United Leukodystrophy Foundation— June 26–27 at the new location: Hilton Chicago/Oakbrook Resort!
We already have our first speaker confirmed, focusing on practical ways to prioritize your own health while caring for a loved one with special needs. 💛 Because caregivers deserve care, too.
Mark your calendars, gather your questions, and get ready for two days of connection, learning, and support with our incredible Krabbe community.
More details coming soon!
11/15/2025
Perfect fall day for wheelchair swinging ingenuity. 🍁❤️💛
11/15/2025
I (Abbey) wrote this as a response to a frustrated mother of a kiddo with behavioral needs, and thought I'd share my response to her here, as well. ❤
"I have learned through being a teacher of kiddos with exceptional needs, and now as a mother of a child with complex medical needs, that each child has a "love language." The toughest kids that I thought HATED my guts, came back years later and thanked me for not giving up on them. The kids that were silent in class and rolled their eyes at me when I asked them to stay after class to do a favor for me or run an errand for me, thanked me for trusting them and giving them confidence when the rest of the school thought they were "dumb." I've had pencils thrown at me, a desk pushed at me that dislocated my hip, tore my shoulder, and spit on. A student found out where I lived and threatened he would hurt me at home.
Now as a mother of a child that isn't able to speak traditionally, his father and I are cued in on all of the body movements and nonverbal cues and respond each time, to show him we are listening and watching in hopes he never stops trying. As a parent of a child with complex medical needs that essentially I cannot cure, the feeling of helplessness is so deep it's hard to function some days; this life is very, very hard.
Essentially negative attention, is still attention, and with some help and therapy, maybe that attention or communication-seeking can be turned more positive. I always thought that if a kiddo stopped behaving/communicating, negatively or positively, that they felt no one cared. The fact that he is behaving in any way, shows how well he is heard. Just have to work on a more efficient and healthy way to communicate." 😊
11/07/2025
🚨BIG ANNOUNCEMENT 🚨
Add OREGON, KANSAS AND NEW MEXICO to the states now screening ALL babies for Krabbe Disease!
Great day for Davenport and Moline Challenger League Great River Challenge! 🌞 ⚾
Thank you to our family and friends that came to support our William! And always a big thank you to the sponsors and volunteers that make this happen, and the Augustana Baseball Team for volunteering if their time with us! He has one more game Tuesday at 6:00 at the Miracle Field of the Quad Cities. Then he's done until Spring!
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William was diagnosed with Krabbe Leukodystrophy at the age of 5 months old. He underwent a stem cell transplant at the age of 7 months old and just recently celebrated his 4th birthday.
William developed normally. My undergraduate being in education, I was keyed into the milestones that he should be reaching by a certain time, and he was exceeding these norms. He was a big boy, somewhere around the 97th percentile at his 2 month appointment. Of course, we weren't surprised at his size given his family line; mommy being 5'9" and daddy being 6'4".
Robert and I moved across country when William was little. Once we moved to our final destination, William was about 3 months old. At that time, he started to change. We had an explanation for how he had become a picky eater and how his weight gain slowed down dramatically: stress from the travel, switching from breast milk to formula, and honestly everything made sense. I immediately took him into the pediatrician and we tried so many different types of formula, even at one point giving him a diagnosis of milk protein intolerance (not true, by the way.) The doctors said that he was such a big boy it wasn't too scary that he wasn't gaining weight as quickly, but of course I was not OK with any change in my boy's eating habits and weight gain. He stopped growing at about 14 lbs. His muscles and joints started to stiffen. I could still bend his arms and legs, but they were rigid. At that time, I went to another pediatrician and he thought it may be Cerebral Palsy. I was floored. I knew too much about the disease having a major in special education, and KNEW it didn't get worse over time. Cerebral Palsy is also a brain injury that happens before, during or after birth. Just doesn't make sense. So, I went to yet another pediatrician and he was AMAZING. He immediately referred us to Primary Children's Hospital in Salt Lake for a neuro evaluation. They see hundreds of babies with CP, and she did not believe it was CP because he was "too bright".
This is a very long story with a lot of trips to Salt Lake, but William was eating just enough to not become dehydrated. However, soon after he turned 5 months old, he quit eating completely. I couldn't even get him to take Pedialyte anymore. My pediatrician fast-tracked us to Salt Lake where William was admitted. After several tests and an abnormal MRI, it was presumed he had a rare genetic disorder. It is a type of leukodystrophy called Krabbe Disease. We were told he would not live past his 2nd birthday. There is treatment for it, ONLY if it is caught BEFORE symptoms began. We were told there was no treatment available for William because he had already started to show signs. William will eventually die from not being able to breathe on his own. He will go deaf, blind and have seizures. Paint a picture of every parent's worst nightmare, and that was what we were given after our trip to Salt Lake. However, the blood test took 3 weeks to get the results, and in the meantime we were sent home on a NG feeding tube to get William his much needed nutrients. Ironically, all of his symptoms correlated with malnutrition, so we were really hoping that with some food his body and brain would heal itself. Well, it didn't although he was much happier!
Robert pleaded with our Salt Lake neurologist to find someone to do a blood cord transplant. He said that it was too late, but he would check around the country. He checked Duke, Minnesota and Salt Lake and they all said no, it was too late. We REFUSED to be told no. My best and wonderful friend Katie, who is a registered nurse, found a doctor in Pittsburgh that specialized in rare leukodystrophies including Krabbe, and gave me the website to check out. I called immediately. They said he is most likely a great candidate because his disease is progressing so slowly. A successful transplant will not cure my baby, nor will it help any deterioration that has already taken place. HOWEVER, it does stop the progression of the disease and will keep any skills that he has right now intact. They talked to me over the phone in depth, for a total of I think 3 hours. They got all history, his current abilities, and everything else you can think of. He wasn't just an "infant with Krabbe", he was William. He was unique and he is still able to do so many things! He just can't move very well, but he still coos at me, smiles at strangers, laughs, and gets irritated at me when I won't stop giving him kisses. He tries pushing me away...and I love it. Push me all you want, son. That isn't the first time you'll be irritated at me, nor the last!
We traveled Pittsburgh Monday, December 15, in hopes to get some promising answers for our little boy. After a week of several tests, he was considered a candidate for a transplant.
William engrafted on February 18, 2015, at the age of 8 months old. It took 18 days after the stem cells were transplanted for them to grow (engraftment). He is now 4, attends preschool, can count to 12, knows his colors, loves to read books, is speaking with an augmentative communication device and has very expressive eyes, can touch his hands to midline, smiles, coos, cries, and is getting stronger every day. Our biggest struggles include keeping his airway and lungs clear, and his muscles stretched. He is a very happy and loving little boy. We are very proud of him and everything he has accomplished.
Thank you for your continued prayers and thoughts.
