2 Stories about Adam Mathers and Colton /Bubble Boy Movie

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In a message dated 8/15/2001 2:20:10 PM Pacific Daylight Time,

burlesonstar@... writes:

> By SALLY ELLERTSON

> Burleson Star Editor

> Adam Mathers was 7 months old when his mother stopped breastfeeding him.

> Then he began getting sick, first with an ear infection and then with a

> sinus infection. The antibiotics weren't making him better, so his doctor

> ordered what his parents Ginger and Ken Mathers of Burleson thought were

> routine tests.

> But the doctor was checking Adam's antibody levels.

> The doctor called and said that Adam had a genetic immune deficiency

> called IgA Deficiency, Ginger said.

> He was diagnosed with that at 12 months. By 18 months, doctors added an

> IgG Deficiency.

> Adam is now 6 years old and will be in the first grade at

> Elementary when school opens Aug. 20. He wears a medical bracelet on his

> ankle so, in case of the need for an emergency blood transfusion, he's not

> given whole blood.

> Whole blood could kill him, his mother said. He has to have washed red

> blood cells from another IgA deficient donor.

> Two-year-old Colton was 6 months old when a 105 degree fever and

> the inability to move his legs earned him a quick trip to Cook Children's

> Medical Center. Doctors diagnosed him with a septic hip, and rushed him

> into surgery.

> The infection had gone into his blood stream from an ear infection, his

> mother Charlotte said. They had to go in, drain his hip, and

> scrape his femur. That was his first ear infection.

> Both Burleson boys were diagnosed with Common Variable Immunodeficiency

> Disease. A more severe form of the disease is called Severe Combined

> Immunodeficiency Disease or the Bubble Boy disease.

> A movie titled Bubble Boy is scheduled for release by Walt Disney and

> Touchstone Picture Aug. 24 (see related story).

> I don't think it's (movie) right because Colton almost died, his

> 11-year-old sister Jordan said.

> The slightest cold or virus could kill those with CVI or SCID because the

> disease robs the boys of their body's defense system, or immunity.

> I told Adam that he had bugs in his body and that his body had trouble

> making the bugs go away so he got medication that said, go away bugs,

> Ginger said. He understood that.

> The cause of the disease is still unclear. Ginger said doctors told them

> that it could be a genetic mutation that occurred while Adam was still

> developing in the womb or it could be hereditary.

> In both boys' cases, there is some sign that there may be family history

> of the disease. Ken, Adam's father, said when he was a child he was always

> sickly. I had asthmatic type symptoms. I know they took my tonsils and

> adenoids out and put tubes in my ears but they didn't have the technology

> then to do the testing.

> Ken has also suffered from chronic sinus infections and may have received

> gamma globulin shots when he was a child.

> Charlotte's baby sister and her husband Lee's baby brother married and

> have a 5-year-old son who is borderline CVI.

> He has horrible eczema, he has asthma, and has sinus and ear infections,

> Charlotte said.

> CVI patients are missing any of five immunogloblins or antibodies that

> protect the body from disease. SCID patients are missing both the T cells

> and B cells necessary for creating immunity to disease.

> The families of children with CVI live in fear, day to day, that he's

> going to develop an infection that he can't recover from, Ginger said of

> Adam. That is a very real threat.

> After Adam was diagnosed, he went to an ear, nose, and throat doctor who

> put tubes in his ears to relieve the ear infections. Then the infection

> went from his ears to his sinuses, which became totally blocked, even with

> the use of the strongest antibiotics.

> In December 1996, at 18 months, Adam began IV therapy. By that time he

> had been sick for so long that he was experiencing failure to thrive,

> according to his mother. He was off the bottom of the charts on height and

> weight and was so frail that nurses had difficulty finding a vein to start

> an IV.

> In a child with IgA Deficiency, the IgA coats the mucus surfaces‹ears,

> sinus, throat, lungs, and gastrointestinal tract, Ginger said. You can't

> replace the IgA because you can't make it go where it needs to go. In a

> child with no IgA like Adam, the body would see IgA as a foreign substance

> and would cause a transfusion reaction.

> The IV therapy, or gamma globulin, which Adam undergoes every 28 days

> includes IgG, which floats freely in the blood.

> It's a clear liquid that looks like water, Ginger said. It gives him

> total body protection. It is given through the IV, directly to the blood,

> and gives him immediate immunity.

> The infusion takes approximately 90 minutes. Adam's family packs a

> lunchbox full of fruit chews and other treats and Adam picks out a

> videotape to watch while he's going through the procedure. Children who

> undergo IV therapy always run the risk of a reaction, which could range

> from an increased temperature and blood pressure and difficulty breathing.

> He'll take the alcohol and wipe his own arm off and when they get through

> with the IV he takes all of the tape off his arm and has even pulled the

> catheter out, Adam's father Ken said.

> The IV therapy actually gives Adam immunity against a variety of viruses,

> depending on what immunities the blood donor possessed. But the immunity is

> temporary, until the body uses up the antibodies.

> With IV therapy, inhalers for his asthma, and antibiotics that he takes

> daily, Adam can live like any other child, go to school, participate in

> Tae Kwon Do, and play outdoors, on good days.

> He has to use his inhaler before any physical activity and before he goes

> outside for recess, Ginger said. When they tested him for allergies, he

> tested positive for mountain cedar, trees, grass, and weeds. When they

> charted it, there's only one week in April and all of December that it's

> safe for him to be outside.

> The family watches the news for ozone reports. Adam can go outside on

> green or yellow ozone days.

> All we've had lately is orange and red days, Ginger said.

> Adam doesn't like the IV therapy and, through play therapy, has said that

> he is depressed because he is different from other kids, but he is not at a

> loss for energy when he's feeling good. He loves to annoy his sister,

> Robin, and role play super heroes like Mystic Ranger, the Power Rangers,

> and Superman and Batman.

> Charlotte and her husband Lee put Colton into daycare at 6 months old.

> He was in daycare for four weeks and he had a septic hip, Charlotte

> said. He had been on five different antibiotics for this ear infection and

> it wasn't going away.

> Colton is already experiencing some arthritis in his left hip and he gets

> eczema on his face.

> That's when we know he's getting sick, Charlotte said.

> There are 10 warning signs for CVI.

> ‹Eight or more new ear infections within one year;

> ‹Two or more serious sinus infections within one year;

> ‹Two or more months on antibiotics with little effect;

> ‹Two or more pneumonia's within one year;

> ‹Failure of an infant to gain weight or grow normally;

> ‹Recurrent, deep skin or organ abcesses;

> ‹Persistent thrush in the mouth or elsewhere on the skin, after the

> child's first birthday;

> ‹Need for intravenous antibiotics to clear infection;

> ‹Two or more deep-seated infections such as sepsis, meningitis, or

> cellulitis;

> ‹A family history of primary immune deficiency.

> We are thinking about starting the IV therapy in the next month or two

> but we don't feel comfortable with it, Charlotte said. Our doctor said

> that seven years ago, when they did the IV IG treatments several children

> got Hepatitis C and his body can't fight Hepatitis C. But if we go with the

> IV therapy it will make his immune system normal every three to four weeks

> so he can fight off infection. When Colton's quality of life outweighs the

> risk, we'll do the IV therapy.

> Colton has been infection free for two months. That's unusual for a boy

> who has had as many as 10 infections a month.

> We don't know why he's doing so well, but we've just been doing a lot of

> praying, Charlotte said.

> The 2 year old takes two antibiotics at bedtime and two breathing

> treatments each day. He just recently developed asthma.

> It started as a constant dry hacking cough that wouldn't go away,

> Charlotte said.

> Colton, a little live wire, doesn't look sick, which Charlotte said is

> deceptive. When he had his hip infection he was up playing around, then the

> next morning he had a 105 fever and couldn't move his legs. It was the

> scariest thing knowing you have to sign papers and them telling you he may

> not make it out of surgery, which was four hours long. The infection went

> to the bone. If we hadn't caught it that soon it could have gone to the

> spine or brain.

> If Charlotte, her husband, or their two oldest children get a virus, it

> may last 24 hours. If Colton comes down with the same virus, he could have

> it for up to a week. Sinus infections could create havoc for up to three

> weeks.

> We went to the ballpark and there was a kid there with full blown chicken

> pox, Charlotte said. We had to leave. Other parents can give their

> children shots but we can't give Colton shots to protect him from that.

> If Charlotte's blood were tested, it would show antibodies for all of the

> diseases she's already experienced. When Colton's blood is tested, it shows

> no antibodies.

> It shows no immunity because his body didn't produce any antibodies to

> fight it, Charlotte said.

> CVI is tough financially on families. Charlotte had to quit her job as a

> certified pharmacy technician at West Pharmacy so she could stay at home

> with Colton.

> I couldn't find anyone who could keep him without keeping a lot of other

> children, Charlotte said. When he's sick sometimes we have to go to the

> doctor every day and that adds up with the doctor visit, labwork, and

> x-rays.

> During the year 2000, Ken and Ginger battled with an insurance company

> Ken's employer switched to because they said Adam's IV therapy was not

> medically necessary. This year Ken's employer changed insurance carriers

> again, and this one covers treatments on an 80/20 ratio.

> Adam's IV therapy treatments are $1,265 every 28 days. When the Mathers

> had exhausted all other avenues, including accepting help from their family

> and trying to get Adam Social Security disability benefits, the couple even

> considered divorce.

> We thought if we divorced we could separate our incomes and qualify Adam

> for help based on my income alone, Virginia said. We were grasping at

> straws to come up with ways to get this covered and get help.

> During the time that the Mathers were essentially without coverage for

> Adam's disease, he had to have surgery to remove his adenoids, which had

> swollen to the point that they were causing him to stop breathing at night;

> treatment of amebic dysentery, which Ginger said doctors said was related

> to the immune deficiency and his inability to fight things off; and strep

> throat, which Ginger said got so bad that Adam's tonsils were huge and

> looked like black and white cauliflower.

> This IV therapy is a temporary fix, Ginger said. His body uses up the

> antibodies and they have to keep replacing them.

> Charlotte called CVI a time bomb because they never know when Colton will

> have his next infection. They can't go to water parks and they are supposed

> to avoid indoor playgrounds that can be ripe with viruses if not properly

> sanitized, but the do take Colton to Sunday School class where he

> can mix with other children his age. He also loves to go watch his

> 11-year-old sister Jordan play softball and his 15-year-old brother

> race BMX bikes in Fort Worth and DeSoto. He loves watching Barney, the

> purple dinosaur, and other movies, riding his bicycle, playing with

> puzzles, and eating Popsicles.

> We want him to live his life as full as he can, Charlotte said. He'll

> know he's sick, but we don't want him to feel different than the other

> kids. We want him to play sports and the IV therapy may be something he has

> to do for that quality of life.

> The don't want other parents to be afraid of Colton.

> He can't give them anything, Charlotte said. It's just the opposite.

> Their kids can make him sick because he has no antibodies. If he has a

> fever we have to catch it fast and we have to know why he has that fever.

> We have to do bloodwork, x-rays, and the doctors have to treat it real

> aggressive. That's the key.

> The Mathers said their doctors advised them not to live our life in a

> cage, Ginger said. They said Adam has a better chance to develop

> immunities by being out and around other people so we have tried to treat

> him as normal as we can. We are still cautious. When he coughs, we freak.

> Adam's father said that even though Adam is doing very well right now,

> there are children who have the same problem that are not healthy. There

> have been children who have died from complications of this disease. What

> you see here is good, but there is a darker side of it. This (IV therapy)

> does not work for all children.

>

>

>

>

>

>

> By SALLY ELLERTSON

> Burleson Star Editor

> Through some kind of genetic mutation or heredity, children with Common

> Variable Immunodeficiency Disease or Severe Combined Immunodeficiency

> Disease are forced to live their lives in constant fear of contracting a

> virus or infection that could kill them.

> That's not a laughing matter.

> Two Burleson families, Ginger and Ken Mathers, their daughter Robin, and

> their 6-year-old son Adam, who was diagnosed with CVI at 18 months, as

> well as Charlotte and Lee , their 2-year-old son Colton who was

> diagnosed with CVI at less than a year old, and his siblings 11-year-old

> Jordan and 15-year-old ‹are speaking out against the Aug. 24 release

> of the Walt Disney/Touchstone Pictures movie Bubble Boy.

> They are making a joke out of a child who has to live in a bubble to

> live, Charlotte said. If they lived the life that those parents had to

> have their child in a bubble, they would understand that it's not funny

> (see story, Page 1). If this was a child with chemotherapy who had to have

> treatment every two or three days, they wouldn't make fun of him.

> Ginger Mathers said some parents are staging a protest, asking that local

> theaters refuse to show the movie.

> Sick kids have enough problems trying to fit in without their disease

> being mocked in a movie, Mathers said. That will just put them up for more

> ridicule by their peers.

> The movie stars Jake Gyllenhaal, Marley Shelton, Swoosie Kurtz, Geoffrey

> Arend, Beetlejuice, Betty Blowtorch, Ever Carradine, Joe-C, Kid Rock,

> Carroll Lynch, Arden Myrin, Dave Sheridan, Sklar, Randy Sklar,

> Spinella, Danny Trejo, and Verne Troyer.

> The plot focuses on Gyllenhaal¹s character, Jimmy Livingston, who was

> born without immunities and raised in a manufactured world provided by his

> mother, Swoosie Kurtz. When Jimmy realizes that he is in love with the girl

> next door (Shelton), he builds his own mobile bubble suit and sets off

> across country to Niagara Falls to confess his love and stop her wedding,

> which is a few days off. According to movie reviews, along the way the

> Bubble Boy meets freaks, bikers, rock stars, and a cult in a race against

> the clock and his parents, who want to take him back to the safety of his

> bubble room.

> Carol Ann Demaret is the mother of Vetter, the real Bubble

> Boy, who had an elementary school in The Woodlands, Texas, named in his

> honor.

> was born with X-linked Severe Combined Immunodeficiency (SCID), the

> most severe of a group of more than 80 genetic diseases of the immune

> system. lived in a germfree protected environment his entire life

> until his death at the age of 12 in 1984 from complications following an

> experimental bone marrow transplant. The transplant introduced a virus into

> 's system and he became sick, slipped into a coma, and died.

> The notion of making a comedy about a life threatening disease is, in and

> of itself, a travesty, 's mother said. It makes a mockery of

> humanity. It dishonors the memory of my son, , and is an insult to

> every primary immune deficient patient.

> Marcia Boyle, founder of IDF, is the mother of 23-year-old son with

> Primary Immune Deficiency Disease.

> This movie is a cheap slap in the face to his ('s) memory, his

> family, and to all of the other children who were born with his disease and

> who have died from it, Boyle said. Unless diagnosed early and treated

> immediately with a risky bone marrow transplant, this disease (SCID) is

> universally fatal. Even under ideal conditions of recognition of treatment,

> which rarely happen, more than 25 percent of children with this disorder

> still die.

> According to a press release from the Immune Deficiency Foundation,

> Patients and families face a number of problems, including blood product

> shortages that interrupt life saving treatments, a constant threat of

> infections, and a myriad of insurance issues surrounding costly medical

> therapies. There is nothing funny about living with a potentially life

> threatening genetic disease.

> The good news is that gene therapy may offer hope for SCID patients.

> According to the IDF, as recently as April 2000, a gene therapy experiment

> in France restored immune system function to two French babies born with

> the X-linked form of SCID, providing unequivocal evidence for the first

> time that gene therapy can succeed in this form of SCID.

>

>