Sweet William's Way with Krabbe

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Davenport, IA
Sweet William's Way with Krabbe

William is an 11 year old with early infantile Krabbe Leukodystrophy. He had a stem cell transplant at 5 months old to slow the progression of the disease.

William is the son of Robert and Abbey (Glasgow) Branch. 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.

05/16/2026

🎁 William's 1️⃣2️⃣TH birthday wishlist is ready for viewing!

💌 Cards can also be mailed to:
PO Box 62
Davenport, IA 52805

We will celebrate the first week of JUNE!

05/12/2026

I remember our peds nurses in Pittsburgh and Salt Lake City. One took the time to answer my questions about where to get my hair cut. Another didn't laugh at our Minion fart thing, which made it more funny. Another was so loud with her PPE she woke up the entire room every night. 😆

Others I remember their patience as they were teaching us now to insert a feeding tube into our new baby and how to HepLock and care for central lines, through our tears and trembling hands.

And how all of our peds nurses are able listen to a child that doesn't speak traditionally.

Their compassion is unmatched.

They make us smile with their unique personalities and great big hearts.

We remember all of them. 💜

04/22/2026

🏫 Approaching the last month of 6️⃣th grade for this guy. 🥹

🤧 He had a pretty rough respiratory illness this past month but he's all better now. We stayed home and did ALL the therapies 24/7 and he rested and healed well. Go Team William! 🩺

⚾ 🎳 He is signed up for summer school, the Unified Bowling League and Challenger Baseball for the summer. 🌞

📆 We are planning another visit to the United Leukodystrophy Foundation Scientific Symposium in Chicago which we are very excited about! We can't wait to see our Leukodystrophy family in June. 💜

🎂 And he turns 1️⃣2️⃣ in less than 2 months!

We are SO proud. ☺️

04/10/2026

William's Challenger Baseball schedule. Team Rotary! He's playing with the 12+ year olds this year 🥹!

04/02/2026

Registered William for 7th grade today for the 26-27 school year. Time is going by SO quickly. 🥹

04/01/2026

William! 😍

03/18/2026

Who want some blueberry muffins?! 🫐💙

Even though he can't eat by mouth, he has BIG FEELINGS about smells. ❤️

03/16/2026

My guys 💙 in all their wonderfulness. 🥰

02/24/2026

Just had an Ah-ha moment. They don't happen often anymore because I'm always so stinking exhausted. And because I'm writing exhausted right now, its messy.

It hit me this morning:

I think back to a time before we entered this chaotic wonderfully tragically beautiful world of medically complex.

Remember what you felt like the next day when you didn't get any sleep? Or you didn't feel well, how that made you feel? For those without medically complex kiddos, think back to those newborn years. You felt like a "bag of a$$holes", my husband says.

Then, we'd bounce back. Feel "normal" again because we were able to sleep, or eat, your kid started sleeping more, or even not be so dang stressed out all the time. We don't have that luxury anymore.

Here we are, almost 12 years into living the life of medically complex parents. We have night nursing a few nights now and then, but I don't really rest. My body doesn't know how to do that anymore. I'm always sleeping with one eye open, one ear open, ready to clean up the $hit that is about to hit the fan.

And we are good at it, probably the best there ever will be.

Because we love our child SO DANG MUCH sometimes, I feel like it's killing me.

So, if you feel like you've been drugged today, and the alarms are alarming, or your kiddo is crying and throwing a fit, remember one thing:

YOU ARE BUILT FOR THIS. And because of that, its OK to not be OK. There is no one better at being your child's mama, than you. Even on your crappiest days, when you're running on caffeine and adrenaline, you are better at being your child's parent than anyone will ever be.

-William's Mama

02/19/2026

Do you remember the books, "Chicken Soup for the Soul"?

I enjoyed writing ever since I was a kid. The proof stands in my writings from age 8 forward that my parents preserved for all these years kept safely in totes and boxes. Exhaustion has definitely pulled me away from the level of mental clarity that is needed to write, but it will always be something I enjoy.

When I was a pr***en, Chicken Soup's first edition was released. Those tales inspired me to be better. Not only as a writer, but as a person. How I loved reading those books. I submitted my own personal stories several times and I have no idea if those stories were ever read by anyone else, but knowing my stories could have made a difference for someone else was all I needed to be motivated to keep writing.

One tale gathered by Jack Canfield and Mark Victor Hansen in that very first edition, teaches the value of taking simple actions in situations that seem insurmountable. It left a mark for me.

Here is the story:

***
A man was walking along a deserted Mexican beach at sunset. He sees another man in the distance, who is picking things up and throwing them into the ocean. Once close enough, he asked what he's doing, to which the man responds that he's throwing stranded starfish back into the sea. The walker is astonished and incredulously points out that not only are there thousands of starfish on the beach, but that a similar thing would be happening up and down the coast.

"Can't you see that you can't possibly make a difference?" the man exclaims.

Smiling, the man bends to pick up another starfish and, as he throws it back, says, "Made a difference to that one."

***

For my little Branch family, life has thrown us a hefty curveball with navigating a rare disease. It is often overwhelming and at times I wonder, how can I possibly make a difference when there is so much to consider? I recall that story.

Our power resides in our response. To smiling at a stranger, to giving a few dollars to charity, to being the trustworthy confidant to a friend during their times of difficulty, that hug that student needs to get through the day, to letting go of perfection and realizing that life's beauty is a compilation of messy, sometimes chaotic, events.

I leave you today with The Serenity Prayer that I urge you to repeat to yourself any time life feels out of your control:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

Amen.

Robert recites this prayer to William every night before we put him to bed. I am so incredibly thankful for my Branch boys.

🩵🩵 Abbey 🩵🩵

02/13/2026

Ready for another exciting day of 6th grade! 🎉📚💻😄👨🏼‍🦼

Address

PO BOX 62
Davenport, IA
52805

Website

https://www.paypal.me/sweetwilliamsway

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