RAINBOW of Life Forces (ROLF) is collaborating with Dystrophic Epidermolysis Bullosa Research Association (Debra) Malaysia for its 13th Gold Ribbon Grant-A-Wish campaign.
It will benefit children from Ti-Ratana Welfare Society, Nurhati Selangor and Federal Territory of Kuala Lumpur Welfare Organisation, Thangam Illam Welfare Organisation as well as seven patients from Debra Malaysia, who will be given needful items such as clothes and toys.
The collaboration also aims to share information about managing epidermolysis bullosa (EB) and the services hospitals provide to patients and their families.
In the ROLF campaign, donors purchase the gifts themselves and give them to the children in person.
ROLF founder Adelyn Lim said, “This campaign does not involve cash transactions. The donors grant the children’s wishes by buying the items requested by them.
“We will set a date where they can personally hand over their gifts and meet the children.
“The objective is to create a bridge between the donor and the recipient. As a result, most of the donors would usually take an interest in the children after the campaign.
“We find that this is a very promising way to help the children.”
The process of matching donors with the children began on Oct 1 and the presentation of gifts will take place on Nov 9 and 10 at the respective organisations.
The wishlist can be viewed at www.rolfcommunity.org/category/wish-list-2019/
Those keen to donate can register via www.rolfcommunity.org/gold-ribbon/grant-a-wish-form/
Meanwhile, Debra Malaysia chairman and Hospital Kuala Lumpur consultant paediatric dermatologist Dr Leong Kin Fon said EB was a rare genetic connective tissue disorder with three main features.
“The skin of the child with the disease is fragile. When there is friction exerted on the skin, it will blister and rupture, damaging the outer surface. It can be painful and debilitating, ” he added.
The area of skin affected depends on the child’s age and activity level.
For example, babies with EB will be most affected at their backs because they spend most of their time lying down.
Dr Leong added that EB is an inherited disorder.
“This needs to be emphasised to prevent families from having false assumptions.
“There are those who wrongly assume that this disorder is caused by a food allergy or their children have been cursed.
“When more are aware of this fact, it will prevent people from finding alleged cures from questionable sources, ” he said.
The third feature of EB is that it is lifelong, said Dr Leong.
“These children need specially-made dressings and proper nutrition so they will have less pain.”
He said caring for an EB child was a round-the-clock responsibility.
Debra Malaysia vice-chairman Khatijah Abdullah, who is also a parent of EB children, said: “There are only 100 families registered with Debra Malaysia.
“Children with this disorder are also known as ‘butterfly children’ because their skin is as delicate as a butterfly’s wing.
“After a child is diagnosed, he or she is referred to Debra Malaysia which can help to look after their welfare, ” Khatijah said.
She added that Debra Malaysia is an organisation that provides information on EB care, creates and focuses attention on research for a potential cure, helps provide for the unique homecare and medical needs of EB families as well as seeks support and funding for the necessities of EB children.
Khatijah said Debra Malaysia had helped parents gain access to proper dressings for the skin condition at a lower price.
For details on Debra Malaysia, call 012-391 3328.
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