‘We just want to give them a normal life’
When Jackie and Ray Hoadley found they couldn’t have children, they gave up everything to adopt two children with severe disabilities
Just like any proud mum, Jackie Hoadley loves to chat about her children’s latest achievements. But while other mums might talk about children learning to ride a bike or passing exams, Jackie takes great delight from the little things, like seeing her daughter play in a swimming pool for the first time or watching her son take part in the school play. Ellie (6) and Mathew, (13) both have complex disabilities that may limit their life expectancy. While Mathew arrived in the Hoadley household as a 22-week-old baby with cerebral palsy and epilepsy, since then he’s gone on to develop a catalogue of other conditions including platelet disorder, brittle bones, hip issues, and regular seizures that cannot be controlled by any drugs. Ellie, meanwhile, has cerebral palsy and is visually impaired. But Jackie and Ray are grateful for every day that they have these two rays of sunshine in her lives. Rewind back to the late Nineties and newly married Jackie and Ray had just received the devastating news that they couldn’t have children after Jackie needed a hysterectomy to treat severe endometriosis. Knowing IVF couldn’t guarantee them a child, and concerned about the emotional and financial drain it could have, they decided to adopt. “I’d worked with children with disabilities and I knew that those with additional needs often ended end up in long-term care as people generally don’t want to adopt a child with unknown life expectancy,” says Jackie. They started off by fostering a little boy called Liam, aged four, who wasn’t expected to live another year, but who stayed with with Jackie and Ray until he sadly died aged 12. During that time, Jackie and Ray both gave up their jobs and became adoptive parents to another baby, Mathew, who they’d fallen in love with from the first moment they saw him.
‘We always see the children first and the disability second, and take one day at a time’
“We spotted Mathew in a magazine called Be My Parent, which featured hardto-place children looking to be adopted. His picture didn’t do him justice but we nevertheless thought he was just gorgeous. So we rang up and it went from there. We now always say that we found him in the catalogue,” Jackie laughs. As for Ellie, she came along in 2012 when the loss of Liam left a big hole in the Hoadley family and Mathew said he wanted to be a big brother. “He said to us that he wanted a sister and then of course, like most children, when he got a sister he was like, oh please, send her back! Ellie was completely different for us because she was a girl and reading reports on her the doctors said she would be dead by two. But she’s thrived and now she’s very mobile and noisy – totally different to laid-back Mathew. It’s great to see how they’ve both progressed.” Nowadays, life for Jackie and Ray is a hectic schedule of hospital appointments, school runs and sleepless nights but they do their best to make life as normal as possible. “It is a 24/7 job. We get up at 6am to get them ready for school and drive them there as no taxi will take Mathew because of his seizures. Then throughout the day we have hospital appointments, we apply for funding for new equipment and accept feed deliveries and things. At night we give them medicines and feeds every few hours. The worst thing is if they have a seizure as there’s nothing you can do and a
‘Ellie was different for us because she was a girl. Doctors said she would be dead by two but she has thrived and now she’s very mobile’
minute feels like a lifetime,” says Jackie. “But at the end of the day we always see the children first and the disability second. And we take one day at a time. We still go on holiday, even though something could happen to either of them. “They’re kids and they deserve a normal family life. Mathew is now a Scout, while Ellie is just starting at Rainbows. They do everything normal children do. And the smiles they give you mean everything,” Jackie beams. The couple also benefit from the help of friends, community nurses and a children’s hospice charity called Demelza, who provide specialist care for Ellie and Mathew while Jackie and Ray enjoy some much-appreciated respite. “Demelza are there for us through good and bad and the children have such a brilliant time there while we get looked after as well. Not all parents choose to stay with the children but we do because we see it as a holiday where can enjoy a lie-in without worrying about preparing feeds or checking monitors while
the children have one-to-one care. We can also talk about things with other parents there. “The future for Ellie and Mathew is obviously unpredictable and they may not make it to adulthood. But we just thank every day that they’re with us and stay really positive. They are fighters, having seen off some really serious illnesses in their years, so we have to be fighters too.” if you would like to find out more information about demelza hospice care for children, or send a donation, call 01795 845 200 or visit www.demelza.org.uk