Malakai's fight against MPS 1 Hurler Syndrome

Hello Everyone

My name is Shayla, I’m the mommy to Logan and Malakai. I’m reaching out to you because we're in need of help.

Since Malakai was born, I always knew something wasn't quite right with his health. He was always a very congested baby and it wasn't until he was admitted for a two week stay in hospital with RSV that we soon began putting the pieces of the puzzle together which still took months, many unanswered questions, loads of tests and many tears. Throughout all of these tests, Malakai has been an absolute beacon of strength and has been the happiest little boy I know and never without a gorgeous smile on his face. Malakai is only 18 months old.

Recently as a family we have received a devastating diagnosis with Mucopolysaccharidosis 1 (MPS 1 - Hurler Syndrome).

This is a very rare genetic disease that is incurable and ultimately shortens your lifespan quite significantly (5 years old without treatment or 20-30 years with treatment). There are two treatments available to help with his development as he grows up and slowing down the effects of the disease. Malakai will be starting his enzyme therapy (ETR) in Bristol Hospital before we move up to Manchester with the hope that these enzymes will help his spine to straighten, his breathing improve and keep his organs healthy. He will receive this treatment weekly in Bristol Hospital, Unfortunately Malakai won't be able to stay on the enzyme therapy as a life long treatment due to the MPS 1 affecting his brain therefore without a stem cell transplant Malakai is at high risk for brain disease. That's where Manchester Children's Hospital comes in. We'll be going up there so Malakai can undergo chemotherapy and prepare his body for a stem cell transplant that he will be receiving from a donor and hoping Malakai's body doesn't reject it. This is an extremely high risk procedure so doctors will continue to monitor him while they wait for engraftment and keep him on a lot of medication to prevent sickness during this precarious time. This will be a 4-6 month stay in Manchester if no complications arise. A transplant for someone with MPS 1 is different than for someone with cancer. He needs a center that has specific experience with his disease. which is why we need to relocate to Manchester for this period.

We are uprooting our lives to give Malakai the best possible chance at a healthy development and life, he deserves nothing but the absolute best.

I'm launching this fundraiser to help with the costs associated with this life saving journey - transportation, accommodation, food, incoming bills and care for my other gorgeous son Logan to try and keep his life as normal as possible and still attend preschool.

I'm hoping by setting up this gofundme page, people and loved ones can help me make a difference in Malakai's journey.

Your generosity will provide a much needed relief to our little family during this extremely challenging time.

Every donation, no matter the size will help alleviate the financial strain and allow myself to focus on what truly matters and that's my smiley brave little boy Malakai.

Malakai is a brave and resilient little boy who deserves every opportunity to live a fulfilling life, filled with love and joy despite his diagnosis. With your support, we can help make that possible.

Thank you for your kindness, compassion and generosity. Your contribution will make a meaningful difference in Malakai's life.

Any donations not used by ourselves, I will be donating them to the MPS Society https://mpssociety.org.uk/

With a heart full of gratitude,

Shayla, Logan and Malakai