Masons journey with SCN and Bone Marrow Transplant

Well, what a post to write.

Mason now needs his Bone Marrow Transplant.

As a lot of you know, Mason was born with Severe Congenital Neutropenia. He had a very late diagnosis at 2.5 years old and was always unwell as a baby. We didn’t get a diagnosis until we took Mason down the private route because even after Mason had Pneumonia in both lungs - we weren’t being taken seriously that something was wrong.

SCN basically means that Mason cannot fight bacterial infections - he is at high risk of Sepsis because of this, and up until last week, needed daily injections to help him live a normal life. He is also at risk of developing Leukemia.

Since his diagnosis in March 2022, Mason has been on varying doses and medications to help him. We’ve spent alot of time in and out and admitted to hospital because of illness’ and temperatures.

Mason has what they call ‘Emergency Protocol’ which means any temperature above 38, he is required to go into hospital to have bloods, blood cultures, IV antibiotics and an inpatient stay if he is too poorly or his Neutrophils are in the ‘Severe’ range. There are certain childhood infections that we also have to be careful of.

In his first year of diagnosis, we had over 50 admissions and trips to the hospital.

In March 2023, we found out that Mason’s body had created another genetic mutation, alongside the one he was born with - meaning he was in the more likely category of his condition becoming Leukemia.

We started work up for a Bone Marrow Transplant. This was then put on hold later that year because we didn’t have a 10/10 match for him and at this point - the risk didn’t outweigh the benefit while he was still doing well and the cells weren’t changing to Leukemia.

So we watched and waited (anxiously), for almost 2 years. Checking Mason’s bone marrow every 6 months to make sure there were no significant changes, no new mutations and nothing else going on.

Nearly two weeks ago, that changed.

Masons bone marrow has developed a third Mutation. He now has 3 to contend with.

I quote ‘Mason’s bone marrow is trying really hard to turn to Leukemia and we need to transplant’..

Mason’s injections have now needed to be reduced to 3 days a week to help slow down the new mutation from getting worse.

Suddenly, the donors on the register that weren’t suitable and the benefit doesn’t outweigh the risk. Now does. Currently, there is nothing that they can see that they can call Leukemia - at the moment. And we are hoping and praying it stays that way.

Mason is being worked up for Transplant.

Will have a new Hickman line fitted in just under 3 weeks (he has had multiple lines before), will need another bone marrow aspiration to check the levels the new mutation is at and many other tests before entering BMT (Bone Marrow Transplant)

We will need to live in the hospital for 6-8 weeks minimum, he will require chemotherapy for conditioning prior to transplant and we will basically (and hopefully) be resetting his immune system for him to start over.

From what we already know, this will be a very gruelling process. We are yet to meet with BMT team and as you can imagine, this is a very hard and anxious time for us.

At the moment we have been given a rough time frame of March-April for this to take place. Although things can and do change quite quickly.

We are reaching out for support now, something we have never done and hoped we would never need too.

We need your help.

We have started a go fund me to help the financial burden of not being able to work properly, paying bills, the expenses of hospital life and running both houses that Mason calls home. As well as transport costs to and from the hospital.

Anything that could possibly be left over, would be used to treat Mason at the end of this journey and the rest donated to charities.

Even after he comes home we will be having lots of appointments and admissions, Hospital trips are very costly.

We appreciate anything you can do, whether that be donating or spreading the word to those who can.

Please share this across any platform.

We will keep this platform and our others updated as everything progresses.

Whilst trying our best to also maintain as much of Mason’s privacy as we can.

Thank you so much!

Emily, Jamal & Mason xx