MYLA mae Hatcher is one in a million - literally.
Two years ago she was diagnosed with a very rare condition severe aplastic anaemia.
“Doctors told us it was a one in a million chance,” says mum Danielle from Sheffield.
They also told the family that Myla would need a bone marrow transplant which had to be a 10/10 match.
When none of her family was a perfect match the Hatchers turned to the stem cell register run by blood cancer charity DKMS. Just before Christmas 2017 an anonymous 21-year-old donor proved to be the match they had been looking for, ending three months of isolation for Myla. Now the lively little girl is about to celebrate her sixth birthday next week with a pamper party and a trip to see her favourite band Little Mix. It is a day her parents feared they may never see.
Now they are urging others to join to the stem cell register and become life-savers.
“I don’t think people realise what a simple procedure it is these days,” says mum of two Danielle.
“By joining the stem cell register people really are giving others the gift of life.”
Myla was just four years old when her parents noticed some bruises on her legs and behind her ear.
Her little brother Rio was just a few weeks old and suffering from a suspected chest infection.
“We went to the Sheffield Children’s Hospital and Rio was admitted for a few hours. Myla was with us and so we asked the doctors whether the bruises were anything to worry about.”
Doctors did some blood tests and sent her home.
“We were really worried then that it might be leukemia,” says Danielle.
But within hours of getting back home doctors called to say they wanted to see Myla urgently.
“They said it wasn’t leukemia but her bone marrow was completely empty which meant she wasn’t producing any white or blood cell, or platelets.”
Myla was diagnosed with severe aplastic anaemia - a serious condition affecting the blood, where the bone marrow and stem cells do not produce enough blood cells. It is also called bone marrow failure and can happen suddenly or develop over time.
It meant that Myla had to have blood transfusions every two to three days.
“They were trying not to scare us but they did say they wanted to see if Rio was a bone marrow match - he was only two months old and the youngest child they’d tested. But he wasn’t a match
“When we received the news of Myla’s diagnosis it felt like my world had been torn apart. As a mother it can be gut-wrenching to know there’s nothing you can do to protect your child.”
As a result of the condition Myla had virtually no immune system which meant she was very prone to virus’s and infection.
“It meant for three months she was housebound as we waited for a donor to be a perfect match,” recalls Danielle.
“It was really hard as she had been such a lively little girl into dancing, swimming and gymnastics and then she was virtually a prisoner in the house.
“We didn’t let anyone in. We didn’t really leave it except to go to the hospital. We didn’t know what to do. Everyone wanted to help. We set up a Facebook page to get more people to go on the bone marrow register.”
Such was the support that Danielle was contacted by the blood cancer charity DKMS to say there had been huge upsurge in people joining the register in the space of two days all in the Sheffield area.
“It was something to keep us going as we felt so helpless.”
Then in February 2018 the Hatchers got a call to say a perfect match had been found.
“All we know was that it was a 21 year old man. We cannot thank him enough for what he has done.”
Myla had to under go chemotherapy to get her body ready for the stem cells transplant. She then had to spend five weeks in an isolation room at Sheffield Children’s Hospital. Danielle and Myla’s dad Jonjo took it turns to spend alternate nights at the hospital. They were supported by the Sick Children’s Trust and Clic Sargent.
“We were able to take her home on April 13 - it was the first time that my mum and my mum-in-law had seen her in six months.”
Eighteen months on and Myla has had a few ups and downs and is still on medication to stop her body rejecting the donated stem cells.
“She has a few issues with her skin due to the transplant, but she has started school, has gone back to swimming and started street dance lessons which she loves,” says Danielle.
“She does get more tired than other children her age and we still have to go the hospital every week, but she’s incredible.”
Although Myla’s life-saving donor was anonymous they have exchanged letters and Danielle is hoping once two years is up they may get to meet him
“I don’t know what I would say, thank you just isn’t enough for saving our little girl’s life.
“Thanks to that one kind stranger, Myla now has a second chance at life and she can go on living her childhood as she should – free, healthy and happy. I feel over the moon to have my little Myla back.
“But there are still hundreds and thousands of patients out there who have not been as lucky as Myla and are still awaiting a match.”
Lisa Nugent, Head of Donor Recruitment at DKMS says: “Myla’s diagnosis was devastating news for her family but since receiving her transplant, she has been able to live life like any other little girl, healthy, happy and care-free.”
STEM CELL DONATION
There are misconceptions surrounding the blood stem cell donation process, which is perceived to be a very invasive process. The reality is around 90 per cent of all donations are made through a method called peripheral blood stem cell (PBSC), which is similar to giving blood. Blood is taken from one arm, passes through a machine which extracts the stem cells and the blood is then returned to them through their other arm. This is an outpatient procedure that usually takes around four hours. In just 10 per cent of cases, donations are made through bone marrow collection. For both methods, the donor’s blood stem cells are regenerated within a few weeks.
For more information visit www.dkms.org.uk