Please help Phoebe meet Minnie, her lifelong friend.

Hi everyone I’m Katherine, Phoebes mammy. Phoebe is 11 years old and she is gravely ill.

Phoebe has been primarily diagnosed with aplastic anaemia. They had initially diagnosed Leukaemia and at the age of just 11 she was sat down by doctors and told she had cancer! She sobbed and screamed whilst I tried desperately to hold her tight and just hug her all the while knowing I could not fix this, I could not make this better. The diagnosis has changed and may change again as further tests are completed.

There are pre leukaemia cells present but the doctor believes it is an illness called aplastic anaemia and that it is the type PROPER which means a bone marrow transplant. Her bone marrow has more or less given up, her blood’s remain dangerously low and she is not producing any of the 3 elements of the blood so she has no or very low palettes, white blood cells and haemoglobin. To give you an example of her blood counts currently her haemoglobin which is typically 140 and hers is 40. Her white cells which can range from 100-400 were sitting at 14!!

There are several more blood tests and lab testing to be completed to fully confirm but she is fairly certain it is aplastic anaemia. These tests will take up to 8 weeks to complete.

In the meantime Phoebe has been placed on the transplant list. She is getting a line into her chest as she will now need blood and palate transfusions twice a week until we can find a donor.

Her immunity is severely compromised so she cannot attend school, be around anyone unwell or large groups of more than 2/3.

They are bringing her brother, Reuben in to be tested to see if he is a suitable donor. It has to be a full sibling for there to be a match so her other brother Christy is not a match.

The Royal Belfast Children's Hospital are being very supportive and are going to help us sort school work, transplant details etc

We are taking each surgery, biopsy, which is always under anaesthetic due to her age, blood transfusion and palate transfusion a step at a time, a step hopefully in the right direction to wellness.

With wellness and no more bloody sickness at our door we plan to take Phoebe and her two brothers to Florida. It’s the one constant distraction we use from this current situation. It’s the one topic that really helps Phoebe be distracted from painful procedures and a very scary serious illness, distraction from missing her friends old and new! Phoebe had just started secondary school (2 weeks ago) and had already made friends and was loving her new school despite struggling with PE and walking around the corridors. Some of her symptoms are extreme fatigue and a complete lack of energy. It will always break my heart that Phoebe was coming in from school upset and saying she couldn’t keep up with the other students when she was doing PE and questioning why she was ‘no good’ compared to everyone else. I keep picturing her struggling around the cross country track not able to breathe and having to walk it, even struggling with walking but fighting on because she desperately wanted to fit in. It will haunt me forever my beautiful kind daughter struggling to walk. What will also haunt me are the bruises - great big unbelievable bruises. We assumed they were happening because of our dog Autie and maybe an iron deficiency. When she started to bruise because her school shirt collar rubbed on her neck creating a ring of angry bruises so then we could ignore it no more.

All her 11 years she has loved Minnie Mouse. She has a teddy Minnie that’s been with her through everything including my bowel cancer two years ago.

She was lucky to go to Paris Euro Disney with her Aunts. Again Minnie was used as a distraction from my cancer journey. Well we need a massive Minnie distraction now, more than anything else in this world. Phoebe needs something amazing, as amazing as her. She has been fighting through this hell for months and she needs to find the fight to keep going, the energy to get twice weekly transfusions and weekly blood tests. She needs a dream to hold onto when she’s crying and upset because she can’t go and see her beloved friends or go to school a basic right for any child.

Please help