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My niece Lilah was born with an extremely rare genetic condition called Russell Silver syndrome. This is a rare form of dwarfism affecting only 1 in 150,000 people. 

The Child Growth Foundation (CGF) is a leading UK charity focusing on the support and management of rare growth conditions affecting children and adults. 

The Child Growth Foundation has helped Lilah and her family better understand Lilah's condition and has provided support and advice. Any donation big or small would greatly help this charity keep on helping families in the UK!

Lilah's Story

At Lilah's 20 week scan the sonographer noticed that Lilah was not growing correctly. Her head was much larger than her body and she was very tiny. Doctors took Lilah's parents into a room and explained that it was not looking good, they didn't think that Lilah would survive. They advised Lilah's parents that it would be best to have an abortion.

Lilah's parents knew that Lilah was strong and despite many hospital visits and many scares through pregnancy, Lilah made it all the way through to 37 weeks. She was a fighter!

Lilah was born by caesarean at 37 weeks weighing just 1.7kg but she was strong and after a short hospital stay she was able to come home. From the moment she was born Lilah had a sparkle in her eye and a determination that made her family know that she was going to be ok.

Lilah struggled to grow and was labelled failure to thrive. Lilah's parents met with many specialists and one of them mentioned Russell Silver syndrome so Lilah was referred to a genetic specialist. After many tests and investigations Lilah was diagnosed with Russell Silver syndrome, ketotic hypoglycaemia, left sided hemihypertrophy and hypermobility.

Despite all efforts Lilah really struggled to gain weight and grow and by the time she was one she still only weighed around 10lbs. Part of her condition meant that Lilah did not feel hunger so Lilah never wanted to eat, she also struggled to maintain her blood sugar levels and her BMI was at a dangerously low level. Lilah's parents fed Lilah at all hours through the day and night to keep her alive. The doctors decided that it would be best for Lilah to be fed via a feeding tube, for a time this was via NG tube until she was able to have surgery to have a G-tube fitted directly into her tummy. Lilah also started Growth Hormone injections and finally she was able to start growing.

As well as being fed via a feeding tube, Lilah has many problems to overcome. She has hypermobility in all of her joints making every day tasks difficult and she has to cope with lot of pain from this. She has daily injections to help her grow and to help her maintain her blood sugar levels. Lilah's body is asymmetrical meaning that one side is larger than the other, this means she walks with a severe limp. She has special shoes to help her and a wheelchair for longer distances or for when she is in pain. She has many surgeries in her future including orthopaedic surgeries and surgery on her jaw.

Lilah's parents joined the child growth foundation and attended their convention. It was wonderful for them to meet other families with children like Lilah and they gained invaluable knowledge from this that has helped them immensely.  

Lilah is now 6 years old and is a happy, beautiful, caring little girl. She lights up a room and is an absolute joy to be around. She has many battles to overcome daily but she has always been so strong and determined and she amazes everyone she meets! She is an absolute inspiration and I would love to raise as much money as I can to help the charity that has helped Lilah and her family.