Mya Ela's Story

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Meet Mya Ela

Natalie is mum to four-year-old Mya Ela.

Since she was two weeks old, Mya Ela suffered from health problems such as constipation, an extended belly and stomach problems. Natalie continuously took her daughter to the doctors, convinced something was not right. However, doctors told her there was nothing to worry about and Mya Ela’s symptoms were just viral infections.

At three years old, Natalie took Mya Ela to A&E as her stomach was extremely hard and she was in a lot of pain. They treated Mya Ela for constipation, before sending her home. It was then in March of 2023, that Natalie got a call from the nursery to say Mya Ela had a fever, and again, had a very extended stomach. Taking her immediately to the Royal Victoria Infirmary (RVI) in Newcastle, Mya Ela was sent for an x-ray which showed she was compacted all the way up to her chest. A paediatrician then informed Natalie that doctors had found a mass.

‘My heart just dropped. They told me they needed to do further investigations. We were admitted overnight, and Mya Ela was sent to get blood tests and scans. I was just blown away as I had no idea what it was. I didn’t understand why there were so many people around me.’

Natalie was then taken up to a private room, and told that Mya Ela’s mass was cancerous, and that it was attached to all her major organs. Doctors informed Natalie that Mya Ela’s condition was called 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, more scans and tests and had a central line fitted. She was then put into intensive care where she was put into an induced coma, put on a ventilator, as well as a dialysis machine for 12 days. She then had to begin emergency chemotherapy even before the biopsies had returned because the mass was so large.

‘Mya Ela wasn’t doing well at first, and doctors told me she might not make it through the night. But she went against all odds and got through it.’

After her first round of chemotherapy, in May 2023, Mya Ela was rushed into emergency surgery to have a stoma bag fitted as she had developed colitis. This had been a reaction to the intense treatment Mya Ela had to receive, and Natalie described this as ‘another adjustment they had to get used to.’

Mya Ela remained in hospital for almost four months while receiving chemotherapy, leaving her bedbound as the treatment made her so poorly. 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 described how isolating this experience was:

‘My dad would come and visit and a few friends, but I still found it very isolating. We were in a room, because Mya Ela had to isolate, we were just isolated all the time. I just kept my head down for the first few weeks, I didn’t talk to anybody. I felt pretty isolated as no one knew exactly what I was going through. The other parents’ kids were going about and playing, but that wasn’t Mya Ela, she was just sleeping all the time.’

Natalie also described her mental health as suffering throughout this period, as she had no break at all.

‘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 and not been listened to, and it’s come down to this. It was awful.’

While they were in the hospital, Natalie and Mya Ela were referred to Rainbow Trust by a Young Lives vs Cancer nurse, and Rainbow Trust Family Support Worker Jaimie has been supporting the family since April 2023.

Jaimie would spend time with Mya Ela in the hospital to give Natalie some time for herself. She also provides emotional support as Natalie navigates life with a seriously ill child.

Mya Ela was allowed to come home at the end of July 2023, which was an adjustment for both her and Natalie. She said:

‘It felt quite strange coming home at first, because I hadn’t spent time there for so long. It took a while for us to adjust to our new life again.’

Now that they are home, Jaimie also provides respite care for Natalie by taking Mya Ela out, as well as bringing round food parcels to make sure they have everything they 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.’
‘It took a while for them to build up their bond, but now it’s unbreakable. They do all the fun things that sometimes I don’t have the energy for. She loves Jaimie, and she keeps asking me “when am I going to see Jaimie again mummy?!”’

Jaimie has also supported Mya Ela as she started back school by taking and picking her up, attending teacher-family meetings or explaining things 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 hard as I have a limited support network around me. Having those breaks in hospital was something I needed. I had so many meetings and I was constantly in and out of the room talking to people. But Jaimie was there to distract Mya Ela, take her off the ward so I could do all these things. And make her feel a bit more normal, some more normality for her was so important.’

As each month passes, Natalie explained that Mya Ela is doing better and better. Her speech is improving, and she recently learned to count to 30!

‘She is developing, it is a bit delayed but after everything she’s gone through, she’s doing amazing.’

Mya Ela is taking part in the Mini Great North Run in September 2024. She will be the face for #TeamMyaEla which includes all the fundraisers running to raise money for Rainbow Trust.

Natalie is passionate about spreading awareness of Burkitt Lymphoma, determined that no family should go through what hers did.

‘I had never heard of Burkitt Lymphoma, and as far as my research told me Mya Ela was the only girl under three to have been diagnosed. It is often found in boys from ages 5-12.’
‘I tell every parent, no matter what it is, get it checked out. As a parent, you know if something isn’t right, and you need to push. That’s what I did, and I’ll keep doing it for my daughter. This isn’t going to help Mya Ela now, but helping someone else would give so much more to my life. Because what I’ve gone through is horrendous. You wouldn’t dream of it. You don’t’ think it’ll be your own.’

Natalie’s message to other families who may need Rainbow Trust’s support is to ‘just go for it.’

‘It is really difficult, we want to be there for our children, but as parents we are also going through that grief and trauma ourselves. We actually do need time to process that and maybe cry.’
‘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.’

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