Amelia is seven years old and lives with her mum, Holly, dad, Jerry and her younger sister, Jessica, in Plymouth.

Amelia has 22q11.2 deletion, a chromosome disorder also known as DiGeorge syndrome that can cause a range of life long issues and health implications, such as learning development and heart problems. 

Holly tells us that Amelia was diagnosed when she was four years old:

It was apparent Amelia was late in meeting her milestones. At the time she had speech and language delay but the reasons why were unknown.

"It wasn’t until her diagnosis that it became clear what was causing her development to stall."

Daily life for Amelia

With DiGeorge syndrome causing varying issues "ranging from very mild to life threatening," Holly explains that Amelia falls into what can be described as the middle spectrum in terms of the syndrome’s implications.

"She has moderate learning disabilities, poor fine and gross motor skills, a hand tremor, anxiety and associated behavioural difficulties too. These are daily challenges she faces and can become frustrated at times."

Amelia has annual blood tests to ensure her immune system is functioning safely. "She is under a number of professionals to monitor her health. A paediatrician, an occupational therapist and immunologist.

Despite all her difficulties, Amelia is a very happy child.

Amelia’s education

Holly explains that Amelia initially began her education in a mainstream school, but found it incredibly difficult. "The gap between her peers was increasing and her anxiety was high. She’d often say she was ill to avoid school."

"Amelia now attends a fantastic special school which she really enjoys with all the correct support in place for her.’ Amelia is currently working at an Early Years level – around the age of four to five."

"Unfortunately due to the ongoing Coronavirus situation, Amelia has been unable to attend to school since March."

Amelia misses the routine of school, her teachers and her friends too. She gets frustrated and upset and is struggling to understand why she’s not there.

Amelia is also missing her weekly horse-riding lessons. "She regularly asks about it, and wants to go back."

How we helped

"When Amelia was three years old we attended a group at our local children’s centre. It was there that we heard all about Family Fund."

Family Fund have been able to help Amelia with a specialist toys, an iPad, sensory equipment and most recently a games console.

How it’s made a difference

"All of the items have been invaluable to us. She uses the iPad for everything, from phonics, letter formation, educational games and watching videos. The sensory equipment has allowed us to work with Amelia at home in developing her fine and gross motor skills to provide safe, alternative sensory experiences for her."

"The recent grant for a games console has got the whole family playing games together, particularly the horse riding game we have, which Amelia is very fond of."

"The console also aids her hand eye coordination and motor skills. The games and controls can also be adapted to suit various abilities and avoid any frustrations. She really enjoys using technology." In a world where parents are continually exhausted – wading through the system and often having to fight for the necessary support for their children –

Family Fund have been a huge welcome relief for us.

"They provide items we wouldn’t usually be able to afford, and they help with Amelia’s development, enjoyment and happiness. They make ours and Amelia’s lives that bit easier, too."

 

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