Adeline’s Story

“Adeline was born on the 19th July 2020 after 5 years of fertility treatment and IVF. Our world was complete, we could finally enjoy the family life that we had dreamed for many years. Adeline was so perfect in every way. We were so grateful and so in love with her.

On the 1st November 2020 after 2 days of grogginess, bouts of vomiting and a raised fontanelle we decided to take Adeline to the nearest A&E thinking perhaps she had a tummy bug and that we’d be home before we knew it. The following morning a scan showed a large mass on her brain, we were so naïve to the world of cancer at this point, we assumed it would be removed and life would go on. After surgery Adeline’s tumour was sent off for testing. We were then told that Adeline, at only 3 months old had a rare but highly aggressive brain tumour called WHO Grade 3 Supratentorial Ependymoma RELA Fusion Positive.

Life as we had come to know it had changed.

Adeline had 3 further major brain surgeries and had multiple cycles of chemotherapies. Her last surgery in November 2022 had finally removed the full tumour and the doctors decided to put her onto Intrathecal chemotherapy. They were confident this would control the cancer and we would be able to reach 2 and half years old at which point they could consider radiation.

In February 2022 an MRI revealed that the cancer had returned and spread to various places in her brain, the doctors were prepared to do no more despite our begging and pleading.

We cared for Adeline at home until she took her last breath in bed with my husband & I at 03:05AM on the 05th May 2022 aged 21 months.

Adeline was such a beautiful soul who will forever and ever be loved and missed. She flew through every treatment with a smile on her face. Always watching TV and dancing. Giving us the strength to carry on. You really wouldn’t have known the battles she was facing; she was a true warrior.

My husband and I struggle every minute of every day without our Little Lady A.”