Full of giggles and smiles, two-year-old Megan ‘Meggie’ Ford from Kidderminster is a happy little girl with a bubbly personality, however a rare life-limiting condition means she isn’t able to sit or stand without specialist equipment. At the moment she has to be held all the time or placed on the floor at home, but with a twin brother and three older siblings racing around, this isn’t ideal.
The solution is to have a special seat in which she can be properly supported, but comfortable enough to relax at the same time – and Newlife Foundation for Disabled Children is looking for ‘local heroes’ who can help make this happen. Newlife already has £322 towards this vital piece of equipment, which costs £967.
Meggie was just six weeks old when blood tests revealed she had a rare chromosome disorder called Trisomy 9 Mosaic, which means she has three copies of chromosome 9 within her cells. There are just 120 people in the world with this condition and because Meggie also has a secondary chromosome issue, she is considered unique.
Although Meggie’s parents Joanne and Craig don’t know what the future holds for her, on a daily basis she needs to be tube fed as she can’t swallow safely and needs oxygen at night or when she is unwell as she has respiratory difficulties. She also has learning difficulties, fused kidneys, a hole in the heart, a severe curvature of the spine and has hearing and sight difficulties.
As Meggie can’t sit or stand without help, a specialist seat known as a P-Pod -essentially a moulded seat on a beanbag base – would make all the difference, allowing her to be safe and comfortable at all times while giving her the support she needs. Being in the seat would also mean she could interact more with her twin, Oliver, brothers Hayden, aged six, and Ethan, aged seven, and 13-year-old sister Nicole.
Joanne said: “It’s hard to gauge what the future holds for Meggie as her condition is so rare. We’ve been struggling for quite a while and although we have other children, this is a whole new world for us.
“Meggie is a real little battler, she tries really hard to sit up by herself but she can’t. She can only sit on the sofa if someone holds her and she’s quite vulnerable if we place her on the floor. She has a special buggy to go outside in, but she needs somewhere to sit. The big issue we have is safety. The other children can be boisterous as it’s a busy house and there is lots going on, but they are all great with Meggie.
“If we had the P-Pod she would have somewhere she could be safe and comfortable – and it would be so much better for her spine. She could play more easily and as she would be the same height as everyone else when we’re sitting down, so she could really be a part of everything.
“If someone came to the door or another of the children needed me I could leave her in the seat while I went to them – knowing that she would be safe. At the moment I have to carry her everywhere and do everything one handed.
“Meggie loves being with people but she has to be supported from behind, so you can’t interact with her face to face at the same time. Because she can’t see or hear very well the best way to approach her is from the front, otherwise she can become easily scared.
“The P-Pod would give her a change of position from her special buggy or her bed and would let her recline or sit up, depending on what she needs.”
Newlife needs donors and fundraisers who want to really make a difference, helping to transform Meggie’s everyday life. To find out how you can support Meggie, go to www.newlifecharity.co.uk/worcestershire. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email firstname.lastname@example.org.
Newlife guarantees that 100 per cent of monies donated or fundraised in Worcestershire will be used to specifically help children with disabilities and terminal illness in the county. Any money raised surplus to requirements for Meggie will be used to help other local children.
Pictured: Meggie Ford