Cleo is six years old and lives in Oldam with her mum Jennifer, dad Jamie, and her brother and sister. Cleo has been diagnosed with a rare genetic disorder called Weidemann-Steiner syndrome.
“It’s a rare genetic disorder which causes hypermobility, hypotonia, and global developmental delay.
“Cleo didn’t develop the same as other babies. Her weight fluctuated and she didn’t start walking until two years old. Her diagnosis took a long time to accept, it was quite upsetting and it still is sometimes.”
Cleo’s family describe her as “the most loving child that you’ll ever meet. However, she holds onto her emotions too much and she struggles to grasp people outside of our family unit.”
Support from Family Fund
Family Fund have provided a range of grants for Cleo and her family for several years.
“With a grant from Family Fund, we went to the Weidemann-Steiner syndrome conference, which was awesome as we got to meet a lot of other families in similar situations to us. We made some really nice friends and the conference was super helpful.”
In 2021, “we were granted a hot tub which helps with Cleo’s hypermobility. We were recommended hydrotherapy but the travel and expense was not cost effective. The hot tub helps with Cleo’s pain relief since the water relaxes her.
“It’s helped her massively with her hypermobility. But our gas and electric bill has gone up. We’ve not been able to put the hot tub on as much which has had a knock on effect with Cleo as it was such great source of pain relief for her hypermobility. Cleo cries with pain every night and we’ve not been able to use it.”
“She’s really struggling with her pain at the moment, but we’re scared to put the hot tub on.”
How are the rising costs affecting you and your family?
Our research shows that our families have seen a huge increase in living costs while caring for their child and are having a make big cutbacks.
Read our Cost of Caring report to see the biggest impacts the crisis is having on families raising disabled or seriously ill children or young people.
Page last reviewed:
Donate to Family Fund
All proceeds given to Family Fund are used to help disabled and seriously ill children across the UK
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
The technical storage or access that is used exclusively for statistical purposes.The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.