Mya Ela's Story: Donate to Rainbow Trust Children's Charity
Your donations are urgently needed to help us provide support for more families with a seriously ill child.
Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness. Since she was two weeks old, Mya Ela suffered from health problems and despite many trips to the doctor’s she was three years old before she was taken to Royal Victoria Infirmary in Newcastle where a cancerous mass was found and she was given the diagnosis of Burkitt Lymphoma - a rare but aggressive type of cancer.
‘They told me the mass was shutting her body down. If I had left her for one more night in her condition, she wouldn’t have woken up.’
Mya Ela was sent for biopsies, scans and tests and then put into an induced coma in intensive care, put on a ventilator and a dialysis machine for 12 days. She also started emergency chemotherapy because the mass was so large. In May 2023 Mya Ela had emergency surgery to have stoma fitted as she had developed colitis and she remained in hospital for four months receiving further chemotherapy, leaving her bedbound as the treatment made her so poorly.
Her mum, Natalie, remained by her side for the entirety of the time, sleeping next to her, and attending to her needs as Mya Ela did not like anyone medical being near her.
Natalie struggled with the isolation and said, “‘I felt like my heart had been ripped out. It was my daughter, I’m meant to be her protector, and make sure she’s safe and she’s well. I’ve pushed and pushed and pushed with the doctors and not been listened to, and it’s come down to this. It was awful.’
The family were introduced to Jaimie their Rainbow Trust Family Support Worker in April 2023. Initially she spent time with Mya Ela in hospital giving Natalie a much needed break but since July last year Mya Ela has been home and Jaimie provides respite care for Natalie by taking her out as well as bringing food and essential items the family need.
‘Jaimie has been my absolute rock to be honest. I would feel so lost without her. She has made such a big difference to our lives. She’s encouraged Mya Ela to walk again and do things that she enjoys doing. Because she is undiagnosed autism spectrum disorder, Mya Ela can be quite difficult, but Jaimie understands her, and she trusts her.’
Natalie, Mya Ela's mum
Jaimie has also supported Mya Ela as she started back school by taking and picking her up, attending teacher-family meetings or explaining Mya Ela’s needs to her teachers.
‘Jaimie will speak to the school for me and explain what Mya Ela’s been through and what she can and can’t do. It’s such a great help for me.’
‘Without Jaimie, it would have been really as hard I have a limited support network around me.’
As each month passes Mya Ela is doing better and better. Her speech is improving and she recently learned to count to 30. She has also made the brave decision to take part in the Junior and Mini Great North Run. Natalie’s message to other families who may need Rainbow Trust’s support is to ‘just go for it.’
‘Having someone like Jaimie from Rainbow Trust for any family who need it is so important. There's nothing to be scared about. It’s building up the relationship to then be able to let go of the leash a bit and say – the reins are going off. They’re going to be okay and I’m going to be okay too.’
With your help Family Support Workers like Jaimie can make the challenges that families living with childhood illness face that bit more manageable.
Please donate today to help us support more seriously ill children and their families just like Mya Ela's.