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We Fight Any Claim Charity Blog Lilly-May

We Fight Any Claim were recently introduced to a special little girl, Lilly-May. She is a new friend of ours and we would like to tell you a little about her story.

Lilly-May is two years old and was born with Leukodystrophy. Leukodystrophies make up a group of rare genetic disorders that affect the central nervous system, which is responsible for nearly everything we do from our heartbeat to walking. 

When she was just nine months old she was also diagnosed with Silent Aspiration, a condition which means that foods and liquids are swallowed with difficulty and can go into the lungs by mistake; if you think about when something ‘goes down the wrong hole’. Usually when this happens most people will turn red and start to cough as an attempt to get it out of the lungs, however for people with this condition this aspiration can happen silently, which means there will be no signs showing that this has occurred.

Because of her conditions, Lilly-May has to have a special wheelchair to support her head as she has no head control. The chair also helps with positioning and gets her body used to being in the standing position. Although the chair does accommodate some growth, she is expected to outgrow it and will therefore need another one in the near future. She also needs adapted seats for when she is in the bath and a special feeding chair which supports her head so she does not get sick when eating.

Lilly-May lives in Caerphilly with her mother Rhian who is her full time carer. Rhian gets a mere two hours a week respite care, which is her time to wash her hair and take five minutes to herself. For the rest of the time Rhian dedicates all of her time to looking after her little girl. As Lilly-May can struggle to maintain weight, she needs feeding constantly through a tube; however these tubes need changing twice every night. Lilly-May’s grandmother, Ann, is the only other person who is trained in feeding, changing the tubes, and caring for Lilly-May, but she lives 30 miles away in Porthcawl.

Lilly-May often needs to attend the hospital for emergency appointments, but because of the frequency of the visits the ambulance will no longer take her. As Ann drives, she could help take her granddaughter to the hospital but seeing as she is so far away Rhian has to pay £60 in taxis to get her daughter the help she needs.

Some of you may wonder why we’re telling you about this special young lady? Well, after recently meeting her for the first time, helping Lilly-May has become very important to our ever-generous staff here at We Fight Any Claim.  

Debbie James is one of our Sales Supervisors and is good friends with Lilly-May’s grandmother Ann. Debbie told us:

"After speaking with Rhian, I wondered why she didn’t live in Porthcawl with her mum as it would make her life so much easier, and she explained her issues around moving. I just thought that was awful, a child’s basic needs are not being met here and her mum’s basic needs aren’t being met either. I decided we NEED to do something about this, it really upset me. I went straight on Facebook and wrote a post and tagged everyone in it to get as much support for Lilly-May as possible. Rhian and Ann brought Lilly-May in to meet everybody here. So many of my colleagues have got such big hearts, now they’ve also met Lilly-May it’s amazing to see how much they also want to help.”

There is a saying that ‘It takes a village to raise a child’ and this is even more pertinent when the child has such serious conditions as Lilly-May’s, but Rhian is doing this by herself. A Just Giving page has been set up with the aim of moving Lilly-May and her mother down to Porthcawl so they can be closer to Ann. To improve Lilly-May’s quality of life, the aim is to raise enough money to be able to fund building modifications to add disabled access and facilities. Finally, as her condition means she struggles to play and interact in the same way as other children, donations will go towards building a sensory room to provide Lilly-May with additional stimulus. 

Debbie concluded:

"How great would it be if we could get her in her new home for Christmas?”          

Staff at We Fight Any Claim are already brainstorming ideas of ways we can raise money and awareness of Lilly-May’s story across as many avenues as possible, so make sure you come back to our site or our Facebook page for news of our further fundraising efforts. However in the meantime if you would like to show your support for Lilly-May, please visit her Just Giving page.