A family are fundraising to help support their toddler who has been diagnosed with a rare genetic disorder that affects her mobility and impacts how she cries.
Margo Smith is only 18 months old, but according to mum Emma, she is already developmentally delayed and unable to do a lot of things a younger child “would be doing”.
This includes sitting up, crawling or walking. The tot also suffers issues with her larynx, meaning she doesn’t cry like other children might, and has problems feeding, which is what initially made Emma concerned.
When the family, from Coxheath, Maidstone, visited the paediatrician, they said she was “floppy for a child of her age” and “only had a single palmar crease on one of her hands”.
Following blood testing, they confirmed she had Cri Du Chat, a condition that occurs when a piece of a short arm of a chromosome is deleted, and happens every 1 in 20,000 to 50,000 births in the UK.
The spectrum disorder is named for the cat-like cry that infants with the condition have, and other symptoms include developmental delays in speech and motor skills.
The Smith family are fundraising with the Tree of Hope charity, which supports sick and disabled children who need specialist therapies or equipment.
The fundraiser has a £25,000 goal, which has reached a milestone of just over £6,000.
Emma said: “We are hoping to do some fundraising events next year as well, it’s really important for us to get Margo walking, and she needs the physical therapy to do that.
“The private physio we are at at the moment is £105 an hour and it’s not something we can afford to maintain”.
Other costs include hydrotherapy, which can be up to £200 an hour, and specialist equipment like walking frames, standers, and gaiters for her arms and legs.
Early intervention is said to be key in helping children reach their potential, making it extremely important for Margo and her family.
The mother-of-three continued: “We appreciate the whole country is in a bit of a financial dilemma at the moment but if anyone has any way of donating and helping us it would just honestly mean the world”.
Part of her dream is for Margo to be able to be as independent as possible, and to be able to walk and play with her two older brothers.
The fundraiser has a £25,000 goal. You can donate here.
Tree of Hope CEO Becky Andrew said: “We wish Margo and her family all the best with their fundraising activities.
“We are pleased to be supporting them to give them the support in reaching their fundraising goals.”
