Danielle Smith-Houlihan, 38 from Bolton, explains how a grant from Family Fund gave them quality time together.
When Danielle Smith-Houlihan was told during her 12-week pregnancy scan that her son SJ (Sean Junior) could have Down’s syndrome, she refused to have further testing. “They told me the fluid at the back of his neck was at a high level, which could indicate Down’s syndrome or several other conditions, but I didn’t feel that I needed that diagnosis in pregnancy. My husband Sean and I were just delighted to have a baby on the way, and no medical results would have changed that.”
In August 2014, Danielle gave birth to SJ during a planned home delivery. “The midwife told us straight away she suspected SJ had Down’s syndrome, as he had the crease in his hand that is typical in children with the condition and he was also slightly floppy.”
SJ was given a blood test for Down’s syndrome when he was a day old, which came back positive. “I was shocked and remember crying, although looking back I don’t know why. I hadn’t researched Down’s syndrome during pregnancy so I left the hospital with a tiny little baby, a diagnosis and a leaflet about the condition.”
Danielle immediately started researching and contacting local Down’s syndrome support groups, who supplied her with information. “They were an amazing help to me through those early days,” remembers Danielle.
“I also tried not to focus too much on all the negative information on the internet about possible health conditions SJ may have. I was worried about his heart, as I read a lot about children with Down’s syndrome needing open heart surgery. SJ has been diagnosed with a very small hole in his heart, but luckily the doctors believe it is likely to close by itself over time.”
SJ was also diagnosed with epilepsy and bilateral cataracts when he was just a few weeks old. “He was given a high dose of steroids for the epilepsy and has been seizure free since 2015. He also had surgery on his eyes when he was a few weeks old and now wears daily contact lenses, and his vision is starting to improve.”
As SJ got older, he showed signs of a developmental delay and low muscle tone. “He was quite late to sit up and he currently can’t walk unaided. He has monthly physiotherapy appointments and a Grillo walker that he is able to take steps in. He also walks quite well holding my hand and can cruise around the furniture, so we’re hoping with time he will develop the confidence to let go and take a few steps.”
SJ also sees an occupational therapist, who provides any equipment he needs in the home. “We recently had an extension built on the side of the house to provide SJ with a downstairs bedroom and bathroom, which was overseen by his occupational therapist. He was also provided with a specialist bath chair, as he is unable to stand in the shower, and a supportive Heathfield chair with a tray attached, where he can eat his meals.”
In 2016, when SJ was two years old, Danielle decided to apply for a grant from Family Fund to help them buy SJ a special saddle for the family’s pony, Casper. “I’d known about the charity since one of my other children was quite young and thought it would be brilliant if they were able to help us, as it would have taken us a long time to save up for the saddle by ourselves due to other financial commitments,” says Danielle.
“I’ve had horses since I was 15 and we live very close to a farm where our horses are stabled, so all SJ’s brother and sisters – Joshua, 19, George, 18, and April, 10 – have grown up around ponies and I wanted him to have the same opportunities as them. He loves animals and has always enjoyed going to the farm. Ever since he was a tiny baby he would clap his hands in excitement and bend down and cuddle Casper’s neck – so I knew he would love the opportunity to ride. His physiotherapist also told us that riding would be brilliant therapy because it would work his core muscles and improve his co-ordination, muscle tone and balance.”
After a lot of research into saddles, Danielle decided to apply for money to buy a basket saddle for which Family Fund agreed to cover the full costs. “We were delighted as we knew the saddle would be perfect for SJ.It sits on the pony as a traditional saddle would, but it has a basket around the back to offer extra support and a clip around the front for safety. It came with cushions to make it more comfortable for him and it can be used up to age 10, so he will be able use it for years. It will also fit most sizes of pony, so as he gets bigger and outgrows Casper he can use it on another.”
Danielle and her family now go riding together most weekends. “It is a great opportunity for us all to spend time together doing something we enjoy, and SJ loves riding with us. He gets so excited when we pull into the farm and will sign ‘friend’ in Makaton (a sign language developed for people with learning and communication difficulties) whenever he sees Casper, and has now also started to say his name.”
The family did a sponsored ride for World Down Syndrome Day in March, where they put the horses in leg warmers to signify the Lots of Socks theme. “Without the saddle SJ wouldn’t be able join in, and it means so much to have him with us,” says Danielle.
“The charity helps parents to provide things they otherwise might not be able to, and we are incredibly grateful to have benefited. No diagnosis could have told us what an amazing little boy SJ is. He brings joy to all our lives in a way that we could never have imagined. To be able to open up opportunities for him and see him enjoy himself with the rest of his family is wonderful.”
If you would like to follow SJ’s progress and development, you can take a look at his Facebook page: https://m.facebook.com/Sean-Juniors-Journey-174993549526819/
Total raised: £3,948
- Family Fund is the UK’s largest charity providing grants for families on low incomes raising disabled or seriously ill children and young people.
- In 2016/17, it provided 88,119 grants and services worth over £33 million across the UK.
- It has its own child and young person eligibility criteriausing the social model of disability. It can help with one grant per household every 12 months.
- Family Fund also provides information and advice to families, including digital skills training and sleep support through their Tired Outhub (tiredout.org.uk).
- Visit familyfund.org.uk for more information.
The Candis Big Give
Family Fund will use the money raised in the Candis Big Give to provide a Siblings Matter Too grant to siblings of disabled and seriously ill children. The charity will provide siblings with a £50 gift or experience in order to recognise the vital role they play, acknowledge the challenges they face and thank them for the care and support they provide.