By Scott Thompson
MEET THE brave mum-of-three whose neighbours called the police and accused her of ABUSING and BURNING two of her sons because of a rare skin condition they were born with – and although she has since lost one of them to this harrowing illness she is determined to spread awareness so that other families don’t have to go through the same.
Melissa Jaquez (38) from Wichita, Kansas, USA, used to be the director of her local social services but in November 2018 became the full-time carer of her son, Marcos Jordan Burrola-Jaquez (18) also known as Marky The Rock, who was born with a rare genetic condition called severe recessive dystrophic epidermolysis bullosa (RDEB).
Marky has had two brothers. His younger brother Carlos Xavier Tharp-Jacquez was 14 when he passed away in November 2013 and his older brother Michael (22). Sadly, both Marky and Carlos were born with RDEB.
Her children’s condition caused excruciating pain due to paper thin skin that caused blistering and severe itching especially just as the area starts to heal. Neither of them has ever walked and Marky uses a specialised wheelchair.
Because they were in so much pain her children weren’t able to attend school fulltime and Melissa often had the police show up at her house because the public accused her of abusing and burning her own children.
“Both of my boys Carlos and Marky were born with RDEB. Their skin was as thin as butterfly wings, so this illness is also known as ‘Baby Butterfly’. Also, they had no skin on their hands, feet and calves,” Melissa said.
“Neither of them was born with the collagen seven that connects and bonds their skin together. This means that they haven’t ever walked.
“My sons had to have feeding tubes by six months old because even swallowing their own saliva caused open sores in the oesophagus.
“Due to their compromised immune system they couldn’t attend full time school. The public contacted the police who came knocking on my door accusing me of burning and abusing my children because of how they looked.
“I was in total shock. It made me feel very alone. I just didn’t understand why they would go out of their way to call the police instead of approaching us directly and offering support.
“Sadly, Carlos Xavier Tharp-Jaquez passed away at just 14 years old on November 21, 2013. This was due to heart failure because of his condition.”
Marky needs to have specialist care on a daily basis. The old bandages all need to be removed and the wounds need to be cleaned which is very painful for him. He has daily medication to relax his muscles, to relieve his pain and to counteract the symptoms of his other medications.
Sometimes Marky’s condition affects him mentally but overall, he is a very strong and happy person. He has faith in God and gains a lot of support through the church. His older brother Michael (22), also plays a large part in his life.
“Every day we have to take off all the old bandages and replace them. We need to clean the wounds in different ways. Sometimes we need to use bleach wraps and other times we use lavender soaks. It’s really sad to watch because it’s excruciatingly painful for him,” Melissa said.
“Every time the bandages have been changed; he would say Jesus gave him the strength to suffer through the pain.
“I really don’t want to go into too many details about his medications. Al; I can say is that he has been on strong medications including muscle relaxers, narcotics and opioids for his pain and medication to combat the side effects of the pain relief such as drowsiness.
“Marky is extremely limited on what he can do for fun due to his pain. He also has a limited range of motion, so a lot of his time is spent indoors. He loves music, movies, animals and he’s the biggest Spiderman fan you’ll ever meet.
“Marky is very positive. He is well grounded in his faith. There will be times where he says he’s tired of being in pain and gets very sad. He sometimes wishes he could walk and run with the other kids outside.
“But mostly he’s a very joyful person who treats every day as if it’s a blessing.
“We have received so much support from our local church and Marky has a close relationship with his older brother Michael, and they spend a lot of time together. Michael lives nearby and Marky always calls him his hero.
“I post about Marky’s journey on Instagram @Melissa_2010 to help spread awareness.”
For more information about Marky’s story check out his GoFundMe.