Raymon's Medical Fund

Please HELP us raise $20,000 AUD to provide a future for Raymon....living with Dystrophic Epidermolysis Bullosa in rural Thailand.

Raymon's story

Raymon is 10 years old and like many little girls in Thailand, she loves music, playing games, watching television and being with her family.

But Raymon is special – and she needs our help. Right now she weighs less than 15 kilograms, she cannot walk, she lives in pain, she cannot go to school, nor can she go outside and play with other children. She has no friends. She cannot hug her parents. And now she is losing the use of her hands.

Her symptoms are the result of a rare genetic skin disease Dystrophic Epidermolysis Bullosa (DEB). It means her skin is as fragile as a butterfly’s wings, and so she is one of a small number of "Butterfly Skin Children".

The layers of Raymon's skin do not have the ability to bond together and so they blister and peels at the slightest touch. Even the skin inside her mouth can blister. The condition means she can no longer feel the comforting embrace of her mother or father because it will risk further damaging already raw and painful skin.

Living with DEB has been likened to living with third degree burns.

Because of her condition, and the lack of dressings and bandages available to her, Raymon rarely leaves her home, as she cannot wear clothes on her fragile skin.

Each morning Raymon wakes up at 3 o’clock. This is when her mum, Mae Pranee, starts their daily routine before she heads out to work in the rice fields. It takes Mae Pranee one to two hours to clean Raymon's wounds by hand. The family does not have a bathtub to submerse Raymon in to make cleaning her wounds a little easier.

It is a miracle that Raymon has not had significant infections due to her condition and environment.

This is due to her Mum's diligence in cleaning Raymon's wounds.

Once the bathing routine is complete, Mae Pranee then prepares breakfast for Raymon and the family. She then does the washing, cleans the house and prepares for a day at work.

While her mother is working, Raymon spends each day in a large open plan room at the front of

the house. She only leaves this room when her mother carries her to the bathroom to bathe or use the toilet. Raymon can no longer walk and the muscles in her legs have contracted and her hips have fused at 90-degree angle.

There is a television in the large room which Raymon watches sometimes. Thanks to Vincent and his team Raymon now also has a tablet so she can listen to music and stories.

She likes to do puzzles and make jewellery with her mother, when she has some free time.

But sadly Raymon’s fingers have also started to fuse together, which is an outcome of the disease and the lack of dressing and bandaging. It means soon she will not even be able to do the smallest things to play and maintain even a little bit of independence.

She is scheduled for hand surgery in late January. The surgery will be performed by a plastic surgeon at the hospital in Khon Kaen – the closest city to her rural home. The surgery will allow for

Raymon’s fingers to be separated so she can gain use of them again.

However, this means she will need to stay in hospital for a month, with the support of her mother.

Raymon's hard-working parents love her very much, and this is obvious in their care for her. But they cannot afford all the supplies needed to deal with her condition. This is where we come in.

If we all chip in, together, we can generate enough funds to not only help Raymon have her hand surgery but also have access to all the supplies needed to help her live a better life and help her mother better manage Raymon’s condition.

To find out more about children living with DEB, follow this link http://youtu.be/Z66y6VlVwuY .

We have a target, it’s a big one but we know we can do it: we need to raise $20,000.00 AUD for to help this little girl. Raymon needs everyone behind her, so every cent counts – anyone who chips in will have a first-hand impact on this little girl’s life.

Here is the breakdown of expenses:

Surgery and Hospital stay - Firstly, a sum of $4000 is required before mid January so that the hand surgery can go ahead. The surgery is scheduled for mid January because that is the end of rice harvesting season, which means Mae Pranee can have some time off to be there for Raymon in hospital. Raymon will need to stay at the hospital for one month and more if there are any
complications. A private room in the public hospital has been booked and the cost of the room is approximately 45,000 Thai baht for the month. Mae Pranee will also need help buying food and essentials while she stays with Raymon. This is expected to cost around 15,000 baht. At the very least it is estimated that it will cost 60,000 baht for the month, which totals around $2,500 AUD. So to the initial $4000 AUD will help cover any additional costs, that may arise.

Nutritional supplements - Raymon currently weighs less that 15 kilos. Her disease affects her mucous glands and the inside of her mouth can blister. Her family cannot afford to buy nutritional supplements like protein powder for her. The cost of the protein powder is 400 baht or $15 AUD.

We need to start to build up her body for the upcoming surgery.

Dressings and bandages - Dressings and bandages are expensive and post surgery Raymon will require her hands to be bandaged so that her fingers don't fuse together again. We are still sourcing options here in Thailand to find the most appropriate option to use and the cost is still to be determined. In Australia it costs $2,000 a month for full body dressings and bandages, which are fully subsidised by the government.

Pain management - Living with DEB has been likened to living with third degree burns. Raymon is currently only taking Panadol for pain relief. We are working with doctors and contacts in the DEB field to source the right information and medication. But that will also be an additional cost that the family cannot afford.

Coconut oil - Mae Pranee uses organic coconut oil to moisturise Raymon's skin. This is expensive even here in Thailand. The oil she is using at the moment had been given to her by some family members which is great. But to be ongoing it would be out of the family budget reach. It costs 500 baht or $19 AUD a bottle.

Education/activity - Raymon is a very bright young girl and post surgery it would be good for her to be able to have someone come to spend time with her to help with her learning or other activities.

This would also be an additional cost that her family cannot afford.

Raymon's needs are complex and great so there is a team of us working together to provide assistance to Raymon and her family.

So who is team Raymon?

John and Lily Simpson. Founders, Chi Wit Mai, an organisation dedicated to aiding children in need in Thailand. John and Lily are networking, coordinating, facilitating and seeking help and advice from experts in the DB field both internationally and locally to help Raymon have options for treatment/education and activities.

Vincent Lai. Moved to Thailand from Singapore seven years ago. He now pioneers churches in places mostly unreached or non-engaged. John and Lily reached out to Vincent to help after he met Raymon in mid 2015. Vincent and his team visit Raymon and her family every Saturday. They have also funded an air conditioner for the room in which Raymon spends her time.

Karen Welker. Karen has a strong nursing background and so provides a vital link to the medical/hospital system in Khon Kaen. She has been involved in mission and community work in Thailand for 25 years.

Haven Foundation , Thailand. The organisation has been assisting with legal advice, support with fundraising, networks, prayer and support.

You. It takes a village to raise a child, and our village spans across the world. Every person who is able to donate something, big or small, will directly help Raymon and her future.

We are all praying for Raymon and her family and would welcome your prayers also.

Donations (0)

  • Anonymous Anonymous 
    • $20 
    • 33 mos
  • Anonymous 
    • $25 
    • 35 mos
  • milan mikac 
    • $60 
    • 38 mos
  • Tony Cumming 
    • $200 
    • 43 mos
  • Regina Wong 
    • $20 
    • 44 mos

Organizer

Jonathan Vickers 
Organizer
Kiels Mountain, QLD
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