Background

Edward is three and live in Leigh-on-sea with his twin brother George, Mum Katy and Dad Rob.

Mum Katy explains; “Edward was born with Spina Bifida, when a baby’s spine and spinal cord don’t develop properly in the womb, causing a gap in the spine. That affects everything for Edward from the waist down.”

  

Edward’s condition and how it affects him

Edward has a complex mix of conditions. “Very early on he had an operation to close the gap in his spine because of his Spina Bifida. He also has hydrocephalus, which is fluid on his brain and delays in his development. Chiari malformation where the lower part of the brain pushes down on the spinal canal, that affects his breathing and cognitive abilities. He has scoliosis and two holes in his heart, which don’t affect him as much as the other things. Hemihypertrophy, so one side of his body grows longer than the other, which in itself isn’t a big deal but it actually makes him at much higher risk of childhood cancers, so we have to have constant tests for that. He is considered as being unsafe to swallow, so is PEG fed and has a nystagmus that means his eyes shake.”

“Edward also has a rare type of hearing loss where the signal to his brain doesn’t work properly. They said it’s like when your phone loses signal, so sometimes he will hear you and sometimes sound will just cut out. I think he finds it quite distressing as he struggles to pinpoint sound. I was a music teacher before having children and I find I can get his attention if I sing or play something for him. I think children respond to the repetitiveness of music anyway so I don’t think it’s a bad thing to use it to communicate.”

“We go to our local hospice and there's a music therapist there who does a lot of work with him and it really brings him out of his shell. I play cello and trumpet and when I taught, I would have a music stand in front of me, take that away and you have a three year old staring at you at home, it’s very different. But to be honest it’s like a gift Edward’s given me because when it’s appropriate, and he’s in school, I think I’m going to go back and train in music therapy. It really opened my eyes.”

“We also use Makaton as Edward is non-verbal. He can’t sign himself but his twin brother George is really getting the hang of it. It’s so nice seeing George communicate in sign to him and they are starting to do it in nursery so hopefully he is understanding. We are also doing objects of reference so I am taking photos of the things that we do, for example the sofa, his favourite toy, his feeding chair. Then below I have the Makaton symbol for it so hopefully he will start learning them.”

“He has a lot of things against him in life, but he just seems to live more in the moment. All Edward wants is cuddles and human contact and he's cheeky, so cheeky. He sometimes gets his brother into trouble because George is the one who is vocal and even though Edward can’t speak it’s usually him winding George up.”

 

Daily life and challenges for the family

“As Edward’s parents we have a lot of responsibility but often no control over things. We have a lot more control over George’s wellbeing than Edward’s, for example; I really appreciate the health system, the NHS is incredible, but the waiting times are long for things that will give Edward a better quality of life, and that is really difficult. If I sent George to nursery in shoes that didn't fit, I would get a letter home saying they are unsuitable and he must have shoes that are comfortable. Now with Edward, he can wait months to have splints made to fit him and, in the meantime, have to use equipment that isn’t suited to his needs. I find that difficult because I can see the inequality between them.”

“I think George notices that sometimes we have to be very hyper focused on Edward and not him. I think any parent feels like that, with more than one child anyway especially twins, but it's really magnified when you've got a child with a disability who needs extra care.”


“We have a lot of stress and we don't really have the downtime that I think is probably important to avoid burnout. Having a child with a disability is more expensive, I can't blame any specific person it's just a really difficult situation, it's funding. Financially, it's a big strain but things like the grants from Family Fund are just a game changer. We couldn’t afford those things because we're busy paying £100 a day to get to an appointment in London for Edward.”

“But you know, we do a lot of messy play with him so we get to see his cute smile. He's just learnt to open his mouth and he's making this lovely sound. He has a little stim where he shakes his head from side to side and his arms come up so it's very, very clear when he's happy and stimulated in a nice way. It can be really difficult with Edward to get things just right. Something can come along and tip the balance quite quickly, but you know he's pretty good at letting us know when he's happy about things.”

How Family Fund helped

“The first grant we received was two years ago for sensory toys and we are still using them today. We got a sensory ball that we would have never been able to afford, it’s a really big ball and Edward’s physiotherapist was very excited when she saw it. She said it’s like a gym ball and it will actually help his core strength, so that’s good. We've got a dinosaur that you put coins in which Edward has learned to play with over time. We got some lights that have really helped his eyes to track properly. And we got a train set, a musical one. He can't make it go himself, but his twin brother does it for him. As it goes round it rings bells and goes over a little xylophone and Edward will look at every noise and it's nice because it’s something he can do with his brother. The sensory toys haven’t just helped Edward, they help George and their kind of friendship as well.”

“Then in lockdown our cooker broke, we couldn’t get out to look for a new one because we were shielding, so we applied to Family Fund. It was delivered and installed for us, I was really worried at the time about Covid but they wore their masks and were careful and really professional. Again, the process was made so easy by Family Fund. A lot of stuff with Edward feels really overwhelming and Family Fund don't make me feel like that, it's always an easy process.”