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PATRICIA MILLER

Hello,

My name is Trish Miller. 

I am Stevie and Colton's Nanny.

My Grandsons both have Familial Hemophagocytic lymphohistiocytosis (HLH) type 5 which is a very rare autoimmune condition the affects 1 in 50,000 people.

Both my grandsons will need to have Bone Marrow Transplants, for the past 2 years the family have been in and out of Westmead Children’s Hospital but was only diagnosed in March this year and Stevie’s transplant will be the first ever done for this condition at Westmead Children’s Hospital they have a record of over 800 bone marrow transplants but never done one for HLH type 5.

The boys have missed out on so much Stevie in particular has missed a lot of school as the HLH has effected his brain even eating at it.

Poor Stevie had weekly treatments through his spine along with lumbar punctures for 5 weeks waiting for transplant but unfortunately that was postponed until now as his father my son Steve was to donate but got sick and no longer can and is devastated but his big brother Nathan will now be donating.

Stevie 5 is in hospital now having chemotherapy to prepare him for his transplant on the 25th September 2025.

Then it will be Colton’s turn who is 3 years old.

This has been a very stressful, worrying, emotional, illness riddled, journey so far for both them, their Mummy and Daddy, sister, brothers, all of our family.

Their journey is far from over, each transplant with endure 3 months of isolation in hospital, then another 3 months isolation at home making 12 months of isolation all up for their little family.

The cost of living is already hard but including transport, petrol, parking, meals on the run even clothing for Stevie as his weight has fluctuated from the steroids.

 While visiting in hospital with Stevie Leanne and Steve swap every few days returning home to be home with Colton who is struggling with the constant changes.

Keeping up with chores, doctors appointments, hospital appointments and being separated from each other has taken a toll on all of them.

This has been and will continue to be a time consuming, and very financially consuming journey. Please donate to help ease this painful and stressful journey they are about to endure.

Money is not everything but it will certainly help ease the financial difficulties they will suffer as this continues.

Thank you for taking the time to read my plea for helping them.

Support Bone Marrow Transplant journeys of 2 young brothers

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PATRICIA MILLER

PATRICIA MILLER

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Support Bone Marrow Transplant journeys of 2 young brothers