Harold Wood woman appealing for help to buy specialist cot for 18-month-old son with rare genetic condition
PUBLISHED: 13:03 15 October 2012 | UPDATED: 13:28 15 October 2012
The mother of an 18-month-old boy with a rare genetic condition is trying to raise £3,000 to buy him a new specialist cot.
Jayne Daniel from Hall Terrace, Harold Wood said that the new cot “would make a massive difference” to the life of her son, Liam Giblin who is believed to be the only person in the country with chromosome 4 deletion.
She said: “He spends most of his time in pain and the cot would just give him a little bit of comfort.
“Most importantly it means that I can comfort him when he is in pain.”
Liam, who is also deaf, spends most of his time in his cot and has to be fed through tubes.
The cot, which comes from Germany will mean that Liam can be lowered and raised to be fed and it also has a special space for his tubes.
Jayne has already been given £2,000 from Harold Hill charity Wipe Away Tears, but needs to raise more before she can reach her total of £5,000.
She said: “Its really good that Wipe Away Tears, has given us some of the money needed because they have taken a lot of the pressure off of us, but £3,000 is still a lot to ask for.
“I have developed lots of back problems because of the constant bending over to feed him, but most importantly it means that I can give Liam a proper hug because at the moment I can’t hug him because there are too many tubes in the way.”
Doctors first noticed that there was something wrong with Liam when he turned blue just after birth.
He spent three weeks in the intensive care unit and three weeks later he was diagnosed with the condition.
Although other children suffer from genetic conditions related to chromosomes, they believe that Liam is the only person in the country with this exact condition.
Jayne said: “He was only home from hospital for three weeks when we got the call to say that we needed to go in for the results.
“The next day they also told us that he was deaf and it was like our whole world had collapsed.”
She added: “But he is doing really well because he is crawling now and doing things that they said that he would never do, but it is a waiting game because doctors can’t tell us anything about what his future holds.
“When you have a child you hope for everything for them but for Liam we just don’t know what will happen.”
Jayne will be holding a variety show on Saturday October 20 at the myplace centre in Dagnam Park, Drive Harold Hill to raise money to buy the cot. Tickets cost £7.50 call her on 07821965352.