The Little Warrior: Jack's Story

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The Little Warrior: Jack's Story

Follow Jack's story as we navigate the challenges of X-linked Adrenoleukodystrophy (X-ALD), a rare genetic condition. https://gofund.me/d8b6da92

My hope is to not only share our story but create a community for other families facing similar challenges.

03/07/2025

Jack is day +8 post transplant meaning we made it through our first week 💪

Although he took chemo and transplant like a champion we're seeing some issues over the past few days including high blood pressure, extremely high bilirubin and consistent vomiting.

Jack also developed Mucositis, an inflammatory condition that damages the muscous membrane lining in his mouth and GI tract. This can also cause painful sores in the mouth and is a common side effect from chemotherapy.

Jack also requires oxygen when sleeping the past few days because his O2 levels drop too low.

Despite all these challenges, he still somehow remains mostly himself. He loves doing crafts and playing pranks on the nurses. He's silly and happy and says his staying strong like the police told him to.

25/06/2025

Jack finished all Chemotherapy and received his stem cell transplant today. My boy was an absolute champion and continues to kick ass everyday.

Today Jarett and I made a choice with recommendations from his team to insert the ng tube. Aside from struggles with eating and drinking he also struggles taking some of his oral medications.

We're not sure exactly how things will go from here but we hope and pray Jack keeps fighting as hard as he has been.

I love you sweet boy🩵

20/06/2025

Today Jack finished chemotherapy day 3. Unfortunately it's taking a toll now causing a lot of vomiting but after some freezes and gravol he's starting to feel more like himself!

16/06/2025

Jacks CVL surgery went amazing. That tube in his chest will be there while we're here to take bloodwork, give medication, chemo and transplant.

We just had a friend come play a board game with us and now he's watching YouTube waiting for dinner!

16/06/2025

Our sweet boy had so much fun in the hotel with swimming, pizza and snuggles. I have a feeling that beautiful smile and laugh of his will be gone for awhile now but this will all be worth it in the end🩵

15/06/2025

Beautiful day for our drive to Toronto. Jack's fight starts tomorrow with surgery for his CVL placement and chemotherapy starting Tuesday.

Follow along for daily updates and please share Jack's story. Adrenoleukodystrophy is extremely rare with limited information available especially within Canada. With newborn screening now testing for this, more families like ours will share our expirance.

Adrenoleukodystrophy is usually not found until it's too late. My hope is to show families that this disease doesn't have to be a death sentence. There is hope and a future with early intervention.

30/04/2025

WE HAVE A DONOR!🎉

I was informed yesterday that 3 FULL MATCHES have been found!

The donor is being prepared and Jack needs some tests done on his kidneys and heart as well as blood work to confirm match first.

We are expecting to be in Toronto around the end of June for transplant. Jack will receive 1 week of chemotherapy before he receives the transplant.

Thank you to everyone who has supported us in every way up until now. I will be sharing his journey here with daily updates so follow along if you'd like 😊

This is so much sooner than we expected so we are not fully prepared for the financial need. I've been a stay at home mom and Jack's full time caregiver and this will continue for the next 12-18 months while he recovers. Thank you to everyone who has donated and shared and please continue to share Jack's story so we can focus solely on bringing him home.

gofund.me/a3412429

05/02/2025

Welcome Everyone!

February 28th is known as rare disease day so in honour of that, I created this page to start sharing our journey with a child who has a rare disease.

X-linked Adrenoleukodystrophy (ALD) is a genetic disorder that primarily affects boys and men, characterized by the breakdown or loss of myelin, the protective covering surrounding nerve cells in the brain. ALD can be devastating, leading to severe neurological disabilities and, in some cases, can be life-threatening.

The condition is caused by mutations in the ABCD1 gene in the X chromosome. This gene is responsible for creating a protien used to breakdown very long chain fatty acids(VLCFA). Without this protien, there's an accumulation of VLCFA in the brain, spinal cord and adrenal cortex. Without the myelin coating, the nerve cells can't transmit through the body which can lead to loss of motor and cognitive function. This disease is fatal without treatment however there is currently no cure. Some therapies and treatments are used to stop progression but there is no way to reverse damage already occurred.

The most common and currently in Jack's future, will be a stem cell or bone marrow transplant. We have the best transplant team out of Toronto Sick Kids hospital and I was recently informed from our team that after a trial run through the donor bank, Jack was quickly matched with multiple full matches!

Thank you everyone who is coming along with us. I have so much more to share and welcome any family who may be struggling with the same or a similar situation to please reach out and share your story.

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