Background

A couple of years ago Leanne heard of Bubblerush, a fun run for the whole family racing through coloured foam, and has since run it every year for a different charity. “It’s a 5k run through inflatables and obstacles full of bubbles that are all filled with coloured paint. Literally you come out soaked and covered in colour, the kids love it though and we do it as a family.” 

Leanne lives in Bolton with her eight year old son Declan and his little brother Finley. Last year Declan was diagnosed with Cerebral Palsy “It’s so recent his diagnosis that I don’t think he understands it. When he’s having to do his physio five times a day he’s asking, ‘Why me?’ He knows he’s got something wrong with is legs but he’s not fully sure what it is.”

Inspiration behind fundraising for Family Fund

Leanne explains;

“When we received the grant for Declan in February, I was amazed. I read up on how Family Fund help so many families caring for children with disabilities, so I thought why not run for you this year.” 

“The laptop has been brilliant for Declan especially now he is in year four at school. I could never have afforded a computer, he had a tablet but it couldn’t get his school apps on there to do the work, they were having to print everything off for him.”

“He’s been doing really well, it’s built up his confidence, he’s learnt to type and has done loads better at school.”

Declan’s condition

Declan’s Cerebral Palsy went undiagnosed until he was seven years old.

“He was born prematurely at 24 weeks and had a brain haemorrhage when he was six days old. At age three I took him to the hospital to ask why he was toe walking and nothing was ever picked up on.”

“Then at the age of seven they said he needed a tendon operation and luckily, we were sent to see a specialist who suggested an MRI scan before the operation. The results came back and last year he was diagnosed with mild to moderate Cerebral Palsy. To be honest I wasn’t shocked because I had been Googling it that much anyway.” 

“Because of the misdiagnosis we are having to catch up with his treatments and therapies, but there are somethings that it’s too late for. He has a squint in his left eye, which had it been caught when he was a baby could have fixed itself, but his eyes have matured and there’s nothing they can do now.” 

“For Declan it’s hard, it annoys him that he isn’t the same as his peers and that he has to do physio five times a day. He’d never been able to ride a bike, but always wanted to. Then before lockdown the hospital gave him Botox injections in his legs which helped to loosen up his muscles and stop the spasms, now he can ride a bike. He’s currently waiting for a gait analysis for multi-lengthening surgery, that will last much longer as the Botox only lasts up to 6-12 months depending how much physio you do.” 

Declan’s condition can also affect his sleep, “He’s just been prescribed baclofen to help his sleeping and it will relax his muscles. It means I will get a better night’s sleep too. Before he wouldn’t go to bed until 12:30 - 1:00 and up at 6:00am, but now he’s going to bed at 8:00pm, I’m sat wondering what to do.” 

“He’s very quiet, but once you get to know him, he’s so bubbly and chatty, if he gets to know you, he will never shut up. But I think he also finds it frustrating knowing he can’t do things like sports and P.E. lessons. He keeps asking why he’s not like everyone else.”

Impact on the family

Leanne says she wishes people would ask about Declan’s condition rather than staring. “Sometimes he has meltdowns, and I’m currently getting him assessed for autism, but people will judge you. I get a disability badge for him and when I’m parking people will look at you as if to say, ‘why have you got that?’ I wish people would just ask us. He had splints but he now refuses to wear them because he felt like everyone was staring at him and calling him names.”

As with most siblings Declan and his brother might fallout but Finley is always the first to help out.

“He has a younger brother Finley, they fight all the time, but he is caring and if Declan falls over his brother is the first one there to pick him up and get him a plaster.”

“Covid had an impact on us big time, both kids are really outdoorsy, but they had to stay in. Also, I still had to go to work and Declan wasn’t allowed to go to school because he was on the high risk list, all I got was ‘Why are you allowed to go out and I’m not mum?’ every day.”

“I had to take loads of precautions at work, I was allowed to have a couple of weeks off but the shop stayed open. Then staff started to drop like flies and I thought I can’t not help them; I didn’t think it was fair. So, for a few weeks Declan stayed at my sister’s house, she’s a teacher so was at home, and that meant I could go back to work. I would come home, clothes off, straight in the shower then go and see Declan as soon as I could.” 

Fundraising and motivation

Leanne was really motivated by how we help other families like hers; “I wanted to run for the people you are helping. Also because of what the charity actually does with the money when you receive it, it goes back to parents and children who need the money. If that means you could help more people then that motivated me to raise as much as possible.”

“I asked around friends and family and set up a Facebook group. But I also work for Home Bargains, I emailed the owner of the company and he agreed for me to put a collection at the end of each till and customers put their change in there at the end of their shop.”

To help Leanne with her fundraising we sent out our Fundraising Pack, “You sent out an information pack with different fundraising ideas. The only thing I messaged and asked for was a certificate for Declan because he absolutely loves certificates. As soon as he got it, he wanted to show it at school and they included it, with a picture of him holding it up, in the newsletter. He was really happy with that.”

The event

“The event was really hard for Declan, even walking 5k is really hard for him because he can’t walk that far normally. He did start to limp and we had to have a break in the middle where we sat on the grass and I had to rub his legs for about 10 minutes. But really, I think for him it was more enjoyable than hard.” 

“In the end we enjoyed doing the whole run, we bought the googles for him but he still came out green, it took about three days to get it out.”

 One thing that Leanne would say to other people thinking of fundraising for Family Fund would be; “If Declan can do it, anyone can do it. It’s always amazing if you can find an event that gets the whole family involved, then fundraise as much as you can. You do have to keep on at people as well though, keep reminding them to get their money out!”