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Mother's buggy walk in memory of little Freddie
A mother who had to nurse her child through an extremely rare genetic skin condition before he died is holding an event to mark what would have been his first birthday.
12-week-old Freddie Patenall, of Higham Ferrers, died last September from ichthyosis, a rare condition which stops teeth and hair growing and requires rigorous scrubbing to remove excessive skin growth and prevent infections which can cause death.
Freddie, who was also born without one of his kidneys, had to have creams applied to his skin every three hours and by the time of his death he had lost his sight.
His mother, Rebecca Jeffery, said: "You never think something like this will happen to your family and to watch your child suffer is heart-breaking.
"New skin normally grows over three weeks but with this condition it literally grows overnight and because it's the largest organ of your body all your energy goes to grow skin so you don't put on weight.
"We had to cream Freddie every three hours, throughout the day and night, and bath him every day to get the skin off.
"If you didn't his skin would get dry and crack and it would lead to infections because this condition also means your immune system is low."
In Freddie's memory Miss Jeffery is planning to hold a sponsored buggy walk at Stanwick Lakes at 2pm on June 19 to mark what would have been her son's first birthday.
The event will be in aid of the Ichthyosis Support Group which want to raise 40,000 to provide a nurse to help families with newborn children who have the condition.
Freddie's family also hope to raise awareness of the condition among the public and the medical profession.
Miss Jeffery said: "This condition is so rare that on average a baby will be born with this condition in Kettering only one in every 100 years.
"When Freddie was born we were told about his condition and then discharged two days later with a pot of cream. Medical professionals in general do not know enough about this condition."
Kettering General Hospital's chief executive, Dr Mark Newbold, said: "We're always happy to talk to families face-to-face about any concerns they have about care.
"When dealing with rare skin conditions in children our consultants would always seek further specialist advice if needed."
To sponsor the buggy walk visit www.justgiving.co.uk/baby-freddie and anyone who wants to take part can turn up on the day.
For more details about the illness visit www.ichthyosis.org.uk.
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Sunday 27 May 2012
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