Kind-hearted woman wants to raise funds for friend suffering from rare Pompe disease

Submitted by Stomper Serene

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Stomper Serene is appealing for donations to raise funds for her friend, Emily who was diagnosed with Pompe disease when she was 14.

She is now 24 years old.

Pompe disease is a permanent progressive muscle weakening condition that affects about 1 in 40,000 people.

The condition is due to the lack of enzymes that leads to the inability in breaking down the glycogen in her body which damages her muscles, causing them to deteriorate overtime. As the disorder progresses, breathing problems can lead to respiratory failure.

There is no cure, only treatment called Enzyme Replacement Therapy (ERT), to prolong the degeneration of the muscles. It is a medication that replaces this enzyme which is missing in her body to help in the process of breaking down glycogen. It is directly infused into the bloodstream through her vein.

Based on her body weight, Emily needs about $600,000 for a year's treatment.

The infusion will be administered every fortnight where Emily will spend 8 hours in the hospital undergoing treatment each time.

Emily has already gone through the treatment for slightly over a year and there has been an improvement to her condition in terms of her mobility and muscles functionality.

Serene wrote:

"Emily is now serving in her church as a motion graphics designer in hope to give back to her source of support and motivation.

"She has been an inspiration to the people around her.

"Despite her condition, she never complains and conversely, she was often seen encouraging her friends and lending a helping hand to others with her cheerful disposition.

"She has a strong belief in the spirit of, ‘Don’t let the circumstances define what you can or cannot do.’

"Everyone deserves a chance of being treated and that reason should not deprive Emily a chance of feeling better each day.

"Your support means a lot to Emily and will make a difference. Thank you in advance for sharing some love and helping her in running this race."

If you want to help Emily, visit the GIVEasia fundraising site here.