6-Year-Old American Heart Association Ambassador Hopes to Empower Other Children: "I Have a Special Heart"

Isabel Siqueros Sara Siqueros Restrictive Cardiomyopathy American Heart Association American Heart Association Ambassador

By Camille Hutchison , Parent Herald Sep 28, 12:32 pm

Isabel Siqueros is no different from typical girls who love playing with her brothers, but people don't know that she is a survivor. "I am Isabel, and I have a special heart," the six-year-old told the Fox10 Phoenix. She was diagnosed with a rare heart failure condition, Restrictive Cardiomyopathy, when she was two years old.

Sara Siqueros, Isabel's mother, told the news outlet that she was speechless when she found out about her daughter's diagnosis. She said the best way to describe her feelings at the time was like someone just ripped her heart out of her chest, and it was an out-of-body experience knowing that her child had a serious disorder.

The American Heart Association ambassador's mother just gave birth to Isabel's twin brothers when she learned of her daughter's diagnosis. Unfortunately, the family found out that there was no treatment for Isabel's condition. Luckily, the young girl was listed for a heart transplant and obtained her second chance at life in May 2018. The mother revealed that she was terrified, wondering if Isabel would make it or not or if her heart would accept or reject it. She added that she felt relieved when she first found out that her child was listed for a heart transplant but that soon changed to sadness, knowing what the other family was going through at the same time.

Sharing Isabel's story would make people more aware that there are children who are facing huge battles.

Isabel would be telling her story as an ambassador

Morgan Porter of the American Heart Association said that the association needs to ensure that they are empowering children to share stories in a local school so kids would learn a lot from others' experiences and what difference it would make to save lives while attempting to connect with a story locally. Being an ambassador, children can witness and hear what someone like Isabel has been through.

Porter said that Isabel would serve as the face and voice of the American Heart Association in school programs; thus, the little girl will record fun and educational videos and help share her story in different ways through school communications.

Sara added that Isabel also helped her brother, who was diagnosed with the same disease and also received a transplant. The mother is confident that her daughter will make a huge difference in many lives. She also hopes that Isabel will know how special and lucky she is to be given a second chance at life and she can use her voice to help other kids like her.

Restrictive Cardiomyopathy or RCM is a rare disease and accounts for approximately 5 percent of all cases of cardiomyopathy. The three major cardiomyopathies are dilated, hypertrophic, and restrictive. RCM is the least common form, per the National Library of Medicine.

How rare is Restrictive Cardiomyopathy?

Cardiomyopathy is a rare heart muscle disease that commonly affects one in 500 people. Restrictive Cardiomyopathy is the rarest condition. Its most common causes are amyloidosis and scarring of the heart from an unknown cause; it can also occur after a heart transplant.

Daily light exercise for people with cardiomyopathy can help them manage symptoms and reduce heart rate and blood pressure over time. Usually, people with this rare condition may need a heart transplant, and the outlook depends on the condition's cause, but it is usually poor. Survival after the diagnosis may exceed ten years, per MedlinePlus.