A family who were forced to close their struggling business due to Covid are now unable to pay for life-changing treatment for their sick daughter. Kelly and Manny Torres, from Long Island, New York, are facing a desperate race against time to fundraise $25,000 for three-year-old Kylie who has been left unable to walk or talk due to a rare disease.

There’s no cure for Kylie’s disease – Rett syndrome – and if she is to learn how to walk and talk again then she must receive specialist therapy within the next two years, before the age of five, as that’s when treatment is most effective.

But Manny, 42 and Kelly, 37, have been left on the brink of bankruptcy with $18,000 worth of overdue rent after running out of money to keep their small Spanish restaurant afloat. Cash-strapped, the family have now launched a plea for help to raise money for Kylie’s critical therapy treatment.

Mother of ten, Kelly, said: ‘Our business just went down because of Covid. We have been closed for six months and we are not able to pay the rent.

‘We owe $18,000 and we are not able to pay it. But our main concern is Kylie and how we are going to be able to provide treatment for her.

‘Kylie is three-years-old but doesn’t walk, talk or grab. She functions like a three-month-old baby and she can’t operate like a normal toddler does.

‘She requires to have intense physical, occupational and speech therapy that can change her life. Our insurance does not cover us and that’s why we need to raise the money.

‘If she doesn’t get the therapy then she might never walk or talk again. Her condition effects everything in her day-to-day life.’

Kylie was born as a healthy baby with no sign of any illness or disease in September 2017. It was when she turned one that she started to ‘regress’, said Kelly, and the toddler stopped being able to do many of the things she was able to.

After learning how to talk, walk and develop like any normal child, Kylie slowly started to loose her ability to function as normal.

Kylie’s condition baffled doctors and it took around 18 months for medics to finally figure out what was wrong. She diagnose her with Rett syndrome earlier this year.

The condition is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. It’s caused by a gene mutation is one of the affected person’s sex chromosomes and leads to the child to start to lose some of their abilities.

Symptoms include severe problems with communication and language, memory, mobility, co-ordination and other brain functions.

There is no cure for Rett syndrome, which is found in one in every 12,000 girls born each year, but there are therapeutic treatment available to help those who are effected manage the symptoms.

‘Kylie was born completely normal and was fine right up until she reached the age of one’, said Kelly.

‘But then she started to regress all of a sudden and she has not been the same since.

‘She needs my assistance for everything so she needs to have the intense therapy to help her.

‘The treatment costs between $150 and $250 per session and she needs four sessions a week.

‘There is no way we can pay for it and we are finding things very hard because all we want to do is support our family.’

Manny and Kelly’s plight has been exacerbated by the effect the coronavirus pandemic has had on the Spanish restaurant they own in Ridgewood, Queens. Crippling financial strains have led to the full-time closure of the Las Alcapurrias restaurant and have left the family without a stable and regular income.

The Torres’ expect to need between $25,000 and $30,000 for Kylie’s treatment and a fundraising campaign has been set up for them by a family friend.

If Kylie receives an adequate amount of treatment in the near future she has a chance of being able to regain some movement and the ability to communicate verbally. Although she may end up with some degree of disability forever, ongoing treatment may help Kylie have a better quality of life.

Visit Kylie’s GoFundMe page by clicking here.

For help, support and advice on Rett syndrome click here.

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