The teenager has been suffering from a rare skin condition called epidermolysis bullosa that leads to fragile and blistering skin.
Editor’s note: This article was originally published on September 6, 2019. It has since been updated.
Watching her child suffer a disease with no cure can make a mother feel a complex set of emotions. Even though you want your child to have a normal life you are helpless. However, there are things that you can do to make your child feel better despite the disease.
A mother from the UK recently sent out a plea to people after her teen son told her that he's had enough of life. Rhys, 13, of Bolton, was born with severe Dystrophic Epidermolysis Bullosa (DEB), a group of rare diseases that causes fragile, blistering skin. The blistering can be caused by the most minor injuries like rubbing or scratching. The treatment for this disease is focused on caring for the blisters and stopping fresh ones.
His mother, Tanya Williams, of Lancashire, England told SWNS (via Fox News), "The last few months, he’s had enough of life. He’s had enough of being in pain with the sores. He just wants to give up, he doesn’t want to fight anymore. What do you do, as a mum?"
She wanted to lift his spirits and take his mind off the debilitating disease, also called butterfly skin, that has led to him being confined to a wheelchair. It has also lead to his fingers getting diffused. The pain has gotten to the level that he needs to take morphine to alleviate the pain, which is the only thing doctors can do for those suffering this disease. Tanya said that he told her he wishes "a butterfly would come and take him away". She's asked people to send her birthday cards so he knows that people care for him and he needs to fight on.
“I don’t think he can fight much longer,” she told NY Post. "His life depends on this." He has been confined to his home progressively because of the life-limiting skin condition. “Rhys’ life revolves around school, Xbox, sleep, repeat," Tanya said. "He doesn’t want to go shopping because he doesn’t like the way people look at him."
When he was diagnosed, it was told to the heartbroken mom that her child may not survive into his teenage years. However, his 14th birthday is coming up on September 21 and Tanya wants him to keep fighting. She made a similar request on social media last Christmas and people responded by sending hundreds of holiday cards to cheer her 13-year-old. She wanted him to see that "not everything is bad," she said. "It showed him that he still needs to fight, that there’s people out there who do care and do love him," the mother believes.
In the Facebook post, Tanya wrote, "Hes had an up and down 12 month most days are bad rest are ok. There are times when he wants to give up the fight just to be pain free. So I'm looking for people to just take 5 minutes to send him a card he loves opening cards and seeing that there are people out there who care help spread a smile."
In response, many people sent the 13-year-old birthday cards. In another Facebook post, the mother, wrote, "His first lot of cards check out the smile 😁 keep this smile going guys if 4 cards can make this much of a difference imagine what a few more would do. Thanks all." Dozens of people also wrote to the boy on the social media platform to wish him for his 14th birthday.
Cards can be sent to Rhys at 40 Whalley Avenue, Bolton, BL1 5UD.
References:
https://www.foxnews.com/health/mom-birthday-cards-son-rare-skin-disorder
https://www.facebook.com/105010850878581/photos/a.105018494211150/109692743743725/?type=3
https://nypost.com/2019/09/04/mom-asks-for-birthday-cards-for-son-whos-had-enough-of-life/
