Ameila’s Story

On 18th August last year, just two weeks before Amelia was due to start school, our world was turned upside down when she was diagnosed with Acute Lymphoblastic Leukaemia (ALL).

About four weeks earlier, Amelia developed a rash. At first, we were advised to try antihistamines by the pharmacist but it didn’t seem like that type of rash to me, so we got a doctor’s appointment and were told it was likely HSP (an autoimmune disease) and were asked to bring her back each week for urine tests and blood pressure checks.

Over the following weeks, our lively little whirlwind started to change. She became quieter and would just sit instead of running around with her sister. She was incredibly tired all the time, had very little appetite, and became noticeably pale. A little girl who had always fought bedtime was suddenly sleeping all night and often until nearly midday.

She also started bruising very easily and developed more of the tiny pinprick rashes, that we originally noticed. It was the bruises that appeared in unusual places like her tummy, head and neck, along with her tiredness and other symptoms, that made us realise something wasn’t right.

On 18th August, after spending the day shopping for her new school bag and lunchbox, we took Amelia to the GP. The doctor sent us straight to the children’s hospital for blood tests.

Just six hours later, we were given the horrific news that Amelia had leukaemia.

We spent the next three weeks in hospital while Amelia received blood and platelet transfusions, had a port and NG tube fitted, and started what would be a long two-year course of chemotherapy.

Amelia has been unbelievably brave throughout it all. There have been countless hospital visits, procedures, allergic reactions and both planned and unexpected admissions, but she is now in the maintenance phase of treatment and although not 100%, she is doing so much better.

This journey has affected our whole family, especially Amelia’s siblings, we are all living an ever changing new normal.

We are incredibly grateful to the Ben Saunders Foundation for giving us this special break away and the chance to spend some much-needed time together as a family, away from the hospital appointments and the reality that has become our normal over the past ten months.