Frazer hugs his new teddy
What a beautiful boy, this is Frazer smiling and showing us his happy face, but this extremely brave boy has an extremely rare disease where 5-6 children are diagnosed with late-infantile Batten disease each year in the UK.
Frazer has become through no fault of his own, or his wonderful dedicated parents one of the 30 to 50 affected children in the UK.
Frazers Teddy arrived with a big piece of paper, that the three grown up’s in the picture are holding and what the cheque represents is the hope of all those who raised its financial value, that Frazer will have a wonderful Christmas with minimal suffering and this little help will, assist his Mom and Dad finance the ongoing burden of cost that has to be found for Frazer’s comfort and daily challenging welfare.
Frazers Mommy and Daddy know that the caring Torbay community are aware and trying to assist in so many ways, Frazer has brought the best out of the Local Community.
In the photograph are Eddie Bowcott, on the left with Mr. & Mrs Wilson presenting £1000, Yvonne Wilson had a mission throughout 2018 to help the Wilton family and held a Sunday luncheon at Jordan Masonic Lodge to raise some funding, amazing generosity on the day matched with funding from the Jordan Masonic Lodge Benevolent funds, that raised this wonderful amount.
The heart breaking story of Frazer who has suffered as Children do with late-infantile Batten disease, they are healthy and develop normally for the first few years of life. Towards the end of the second year, developmental progress may start to slow down. Some children are slow to talk. The first definite sign of the disease is usually epilepsy. Seizures may be drops, vacant spells or motor seizures with violent jerking of the limbs and loss of consciousness. Seizures may be controlled by medicines for several months but always recur, becoming difficult to control.
Children tend to become unsteady on their feet with frequent falls and gradually skills such as walking, playing and speech are lost. Children become less able and gradually skills such as walking, playing and speech are lost. Children become less able, and increasingly dependent. By 4-5 years the children usually have myoclonic jerks of their limbs and head nods. They may have difficulties sleeping and become distressed around this time, often for no obvious reason. Vision is gradually lost. By the age of 6 years, most will be completely dependent on families and carers for all of their daily needs. They may need a feeding tube and their arms and legs may become stiff. Some children get frequent chest infections. Death usually occurs between the ages of 6 and 12 years .
It takes a resilient brave and loving family to cope with all of this, and that is what Frazer has, dedicated and loving beyond belief 24/7/365 days of the year, Frazer, Hugging his Teddy the Jordan trio left which comes courtesy of the Masonic Teddies for Loving Care programme that have donated over 45,000 bears to distressed Children via hospitals emergency Departments throughout Devon over the last 9 years but pledged to be back continuing with as much support as they can muster.