Mother of Hemophiliacs suffers, tries to form organization
Most of us are lucky enough to have children who are relatively healthy, who go through childhood with the normal colds and fevers, and maybe a minor accident like a sprained ankle or broken arm. But what if you had a child that bruised constantly and might even die from falling down or getting a small cut? What would you do if the doctors couldn’t tell you what was wrong? What would you do if one of your children had already died and your other sons needed an expensive treatment that could keep them from bleeding to death? You would probably ask for help from anyone willing to lend a hand. That’s exactly what Francisca Bardalez and her family of Big Falls, Toledo is doing. Tonight News Five brings you the story of a mother and her fight to protect her sons, nine year old Ritchie and six year old Brian from a genetic disorder so rare there is only one case in every ten thousand male births. It’s called Hemophilia and it is predominantly passed to males, with women being carriers. It is caused when certain factors in the blood are unable to assist with clotting. If you’ve never heard of Hemophilia, you’re not alone since it is estimated there are only nine families in Belize dealing with the problem.
Francisca Bardalez, Mother
“Well, it’s difficult because we don’t have the literature; we don’t have the treatment; we don’t have the specialists to deal with this problem.”
Bardalez says when her first son, Jerry, was six months old he started getting bruises on his arms, chest and legs from moving around on the floor. The family took the baby to the Belize City Hospital where they were told nothing was wrong and were sent home.
Francisca Bardalez
“I went back home but I still kept on seeing the bruises. He had mouth bleeds, muscle bleeds. I knew something was wrong. What was it, I did not know. We dealt with the problem in a silent way.”
But all the cold soaks with ice and vinegar did not work. One day baby Jerry fell and hit the back of his head. The impact caused extensive bleeding in the brain and the baby died. Bardalez says it was not until 1991, after her son Ritchie was born, that she found out what killed her first baby. Just like his younger brother, when Ritchie turned six months old, he too started bruising. Bardalez says because she knew her first son was misdiagnosed, she decided to treat the bruises at home, while desperately looking for answers through pages of an encyclopedia.
Francisca Bardalez
“We looked up in the encyclopedia, that didn’t offer much literature on it and I tried to use as much padding as I can. Pad the beds, the pillows around the bed, the pillows around the crib, the playpen, the walker. I had made padding for them to avoid bruising. That was what the padding was for, to avoid bruising.”
The padding seems to have helped. But when Ritchie was one year and four months old, he fell and cut his lip. Bardalez says they could not get the bleeding to stop. Ritchie was hospitalized in Punta Gorda where he had to undergo a series of blood transfusions. A blood sample was taken and sent to the United States. The test result reveal that Ritchie was a hemophiliac and deficient in factor eight, one of the main factors needed to allow blood to clot. Ritchie, who by this time had to be transferred to the Belize City Hospital was now literally slowly bleeding to death. The Belize Red Cross was contacted and they in turn got assistance from their partners in Michigan who sent a supply of factor eight through the assistance of a Continental airlines pilot. The medication was injected into Ritchie’s vein and after being hospitalized for almost three weeks, the young boy finally went home. The life saving drive was highlighted in a local U.S. newspaper and the Belize press also ran an article on the factor saving the young boy’s life. As it turned out, this was the article that would bring much needed help to the Bardalez family that continues to this day.
Francisca Bardalez
“We went home and the Belize Times did an article on it, about the factor saving his life and in April a Belizean family visiting from Miami — Leon and Michelle Longsworth — they were visiting their parents in Belmopan and her parents kept the article from the Belize Times and showed it to Michelle.”
The Longsworths, themselves parents of two hemophiliac boys, knew the plight the Bardalez family was in. They flew down to Punta Gorda to meet Francisca and Ritchie. The relationship turned out to be a blessing in the skies.
Francisca Bardalez
“She knew what she had gone through and she knew I was going through the same thing. So she flew down to P.G. and we met at the hospital and we had a discussion there.
She gave me this book; I read it. She gave me some other literature. She told me how she infused her boys herself and it was just nice to meet somebody who knew about the problem.”
Following their initial meeting, the Bardalez and Longsworth families kept in contact. Then several weeks later, Ritchie fell again, bursting his lip in the same spot he had cut earlier that year. The family used the remaining supply of the donated factor eight, but this time the medication did not work immediately. It was not until after several injections, that the hospital finally got the bleeding to stop. Francisca wrote to Michelle Longsworth explaining what had happened.
Francisca Bardalez
“She contacted an organization in her area in Fort Lauderdale, a National Hemophiliac Foundation, and she told them about the Bardalez’s second bleed. It was then recommended that Ritchie fly up to Miami for another testing to see what was wrong.”
It was then the Bardalez discovered that their son was not deficient in factor eight but factor nine, the other main factor needed for blood to clot. Bardalez says she was not only grateful for the information but she was also shown how to take care of her son.
Francisca Bardalez
“They showed me how to infuse. They gave me a little lesson at the hospital. We talked and it was just interesting. I had questions that needed answers. I learned a lot from the trip. It was educational.”
Bardalez says it has taken a lot of patience to protect two otherwise healthy young growing boys from constantly injuring themselves.
Francisca Bardalez
“We can’t say you can’t do this, you can’t do that. They had to live normal lives. It just needs extra care, watching them carefully. I am thankful that we don’t live in an upstairs house, so we don’t have them running up and down the stairs.”
Ritchie Bardalez, Hemophiliac
“Well, I love to ride my bicycle so I can exercise. I also love to play football but I have to watch myself, be careful and I also like to read.”
Q: “Great! What books do you like to read?”
Ritchie Bardalez
“Well, comics, interesting stories and things like that.”
The Bardalez family has been grateful to the Longsworths who have assisted in giving the family donated supplies of factor nine. According to Bardalez, because each treatment costs between six to seven hundred dollars, they are not in the position to buy the medication both their sons need to stay alive.
Francisca Bardalez
“We have not spent a copper on treatment but it has come to the point where you can only beg for a certain time and you can only beg from a source once and a second time and you, they will not willingly give.
It’s a life saving agent. The factor that they need is a life saving agent, so it could be tragedy for us because if you don’t have it, you know what can happen.”
Q: “They just literally bleed to death?”
Francisca Bardalez
“Yes.”
According to the Bardalez the only hope they have is getting assistance from The Leadership Institute for Global Hemophilia Training. This international agency seeks to improve health care for hemophiliacs worldwide by financially assisting countries in getting the medication that’s needed. However, the assistance is only available to a local Hemophilia organization, which Belize does not have.
Francisca Bardalez
“Families with hemophilia have to come together and form a society to get this international assistance and that’s why I need to inform people in Belize that this agency is willing to help but we have got to form a Belize Hemophilia Association.”
Bardalez says if her efforts are unsuccessful, she will be forced to relocate her family to the United States for the sake of her boys. If you would like to contact Francisca Bardalez, she can be reached through the Punta Gorda Hospital or in Belize City at 72138.
