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Imagine not knowing the last time your son or daughter will be able to say, "Mommy and daddy, I love you."

This was what Tayyaba Beg thought of when she found out that all three of her daughters have Sanfillippo syndrome — a rare genetic disorder characterized by mental deterioration, mild physical defects, and behavioral problems. This syndrome, a form of MPS, short for mucopolysacchridoses, is a genetic lysosomal storage disorder caused by the body's inability to produce certain enzymes.

Teaneck residents Tayyaba and her husband Zarrar found out that Abeerah, 10, Khansa, 9, and Zahra, 6, all have MPS when their eldest daughter, Abeerah, was having trouble hearing, sleeping and was always clapping and banging on the walls. Autism was first determined.

Around the same time, Khansa was in school and doing very well until one day the Begs received a phone call from her teacher saying that she is not speaking anymore and she was quiet in the corner. After blood work, a urine test and a skin biopsy, doctors diagnosed them both, along with their youngest sister Zahra, then 1 year old, with the Sanfillippo syndrome.

"To find out what was wrong with my girls broke my heart. This was the hardest part of being a parent," said Tayyaba.

The three girls also have two brothers, Bilal, 7, and Ammar, 3, who was diagnosed with autism.

Sanfilippo syndrome is a progressive disorder, however, the rate at which the children deteriorate varies from one individual to another. The change seen in children with Sanfilippo syndrome occurs most often very gradually, but the disorder tends to have three main stages:

In stage 1, it is noticed that the child starts to lag behind and develops difficult behavior. In stage 2, the child may become extremely active, restless, and often have very difficult behavior. Some children have sleep disturbances. Many like to chew on their hands, clothes, or other accessible items. Language and understanding will gradually become lost. Some children never become toilet trained and those who do will eventually lose the ability. In stage 3, the child will begin to slow down. They have more difficulty when walking or running and fall often, eventually losing the ability to walk altogether.

Right now the Beg girls are in stage 3. They have had many surgeries so far including dental because of their problems with chewing. The family goes through about 32 diapers a day because along with losing the ability to have bladder control, uncontrollable diarrhea is also common in MPS. They wear leg braces, cannot speak, and cannot interact with anyone, including each other. When in pain, common reactions are crying and banging their heads on the wall. One of the girls is currently throwing up and having seizures.

The current life expectancy for children with Sanfilippo syndrome is 11 to 14 years.

"It feels like everything is falling on top of you knowing the future of your children. I have learned so much about what life really means, and I thank God for each little thing. If I didn't have faith, I wouldn't be able to go through this," explained Tayyaba.

The girls throw whatever gets in their hands, including their juice cups that are thrown with force. Tayyaba said that she could probably play football since she learned to dodge the things thrown at her from each side. She has had many bruised lips and a broken nose from all the head butts, pushes, bumping and scratching.

However, those small bruises are nothing compared to Tayyaba’s big heart. "I love my girls so much and with all my heart. I cannot imagine my life without them. They bring a smile on my face each morning. They brighten up my day especially when I feel down. I have learned so much from them and what it means to have faith, courage, and live through whatever life brings you. They are a true blessing. My girls are so beautiful to me no matter what anyone says. And I know their whole world is around me. I want to give them every thing I possibly can. I want to make their short lives as comfortable and full of love," said Tayyaba.

In a visit to their home, the girls were watching television with their brother Ammar. Zahra was excited and curious about her visitors. She was smiling and very jumpy. Khansa was quiet because she has been having breathing problems lately and Abeerah was staring at the television with her fingers in her mouth.

Watching these little girls creates a feeling of sadness knowing they will die soon. However, when looking into their eyes, these beautiful children show courage and helplessness because this syndrome has taken over their little bodies.

At one point, Zahra and Tayyaba held hands and started dancing together. The smiles on their faces enjoying each other’s energy were indescribable.

Tayyaba said that her son Bilal is her little helper. One day he asked her, "Mommy, did God forget how to make my sisters?" He also told his mom that he wants to become a medical scientist to find a cure for MPS. At the present time, there is no cure.

Someone once told Tayyaba that when they die, it would be easier for her. With tears running down her face, she told Suburbanite, "How can anyone say that? It will be so much harder for me to lose my children."

Her husband works seven days a week to support their family because insurance does not pay for all of the bills. They have three wheelchairs that cost $2,500 each and they don’t even have money to build a ramp for them. One dental surgery alone cost $19,000. This does not include medical equipment, food supply for their strict, soy diet, oxygen tanks, pain medication and diapers. The bills will get worse as the girls get sicker.

Life for Tayyaba and Zarrar has changed in every way since the day their children were diagnosed.

"Friends and family leave you. My house has become my whole world. I do not know what vacation means anymore. Eating a simple meal on the table is not possible as well as having a whole family together at the dinner table. Life turns to 24 hours, seven days a week without a break. I can't even take five minutes to shower without having knocking on the door. I am not invited to parties or weddings anymore. You get to learn who your true friends are. Most friends leave you but God sends you better friends, like Grace Redeemer Church parishioners Husna, Bibi, and Fatima. They pray for us and have given us amazing support."

She added, "As a Muslim, I have learned that my three children will be my doors to heaven."

May 15 is reserved as MPS Awareness Day. On this day, take a moment to honor all those in the MPS community. Remember all the children and adults who suffer from MPS/ML disorders. Think about the children we have lost and remember to support each other.

The Nasdaq market in New York City will ring the opening bell on May 15 in honor of MPS Awareness Day.

Tayyaba wants to tell parents, "Please be thank full for every thing God have given to you. Do not complain about your children. Children are a blessing, no matter how they are. Do not stare and whisper in ears when you see a child with special needs, rather go and talk to them, they are people just like you. Please support families with special needs children. Just a smile can make a big difference in their struggling lives."

It breaks Tayyaba’s heart to know that the girls, because of their dementia, have no idea who she is. When she gets them up in the morning, they smile at her, happy that someone is getting them, "but they would smile for anyone picking them up," she said. "It’s so hard to look at my babies and know that they have no idea who I am."

To find out more about the Beg girls, visit www.helpourgirls.com. For more information on the Sanfilippo syndrome, visit www.mpssociety.org.

Teaneck Suburbanite
150 River St
Hackensack, NJ 07601
201-646-6920

STAR LEDGER

Three little girls, one couple's heartache
Monday, January 20, 2003

Imagine looking into the eyes of your little girl -- your princess -- your
oldest child -- and knowing this:

She'll be dead soon.

And, before she dies, she'll suffer terribly.

"I just cannot think of that," says Zarrar Beg, 38, of Teaneck, who admits
he often cannot control his emotions when he speaks of the horror that has
afflicted his young family.

There is something worse. What's worse is looking into the eyes of all three
of your daughters and knowing the same fate probably awaits all of them.

All three little girls -- Abeerah, 6, Khansa, 4, and Zahra, 2 -- have been
diagnosed with the same rare genetic disorder known as Sanfilippo Syndrome.

The disease results in the lack of an enzyme that breaks down cellular
material. Instead, the material accumulates in, and damages, the brain.

Children with the disorder begin life normally. Many, like the Beg girls,
were bright and happy babies and toddlers.

"The house was filled with laughter and singing," says Beg, an inspector for
the U.S. Department of Agriculture. "I can show you the videotapes."

Then, slowly, subtly, the children change -- often in ways that baffle
pediatricians who rarely see the condition.

"First, we were told Abeerah might have a hearing loss," says Beg. "Then, we
were told it was autism, or an autism-like condition."

The happy babies and toddlers turn silent. They become retarded. They are
hyperactive and unmanageable. Can't sleep. They could wreck a house. They
grind their teeth and chew uncontrollably -- window blinds, newspapers,
anything -- and often have their teeth removed because of agonizing dental
pain.

Children with the syndrome suffer from constant diarrhea and uncontrolled
weight loss. Eventually, they go blind and are unable to walk.

Then they die. Usually, between the ages of 10 and 15.

Abeerah and Khansa are in the middle stages of the syndrome. They have
changed from happy, normal little girls to seriously sick children.

Zahra has been tested and diagnosed with the condition. But she doesn't yet
have symptoms.

"She has all the developmental milestones of normal children her age," says
her Pakistan-born mother, Tayyaba Beg, who's only 29. "We should be happy
but we can't celebrate. Her sisters, too, reached those milestones."

Zahra acts and plays like a normal little girl. Despite her age, she
realizes her older sisters are ill and often tries to help feed them. The
Begs also have a 3-year-old son, Bilal, who is apparently not affected but
who must live out his childhood in the shadow of his sisters' illness.

Neither a cure nor a treatment exists. Researchers at Duke University have
had some success with stem cell transplant surgery, but the results have
been mixed -- and it's not clear whether the condition can be reversed.

"Abeerah and Khansa could remain like this for the rest of their lives,"
their mother says. "But, maybe, Zahra could be saved."

The Begs will take their children to North Carolina next week for testing to
determine whether the girls might benefit from the transplant surgery. They
expect to learn only Zahra will be a suitable candidate.

The testing will cost $100,000, of which $80,000 will be paid by the Begs'
medical insurance carrier, Blue Cross and Blue Shield of New Jersey.

The surgery could cost $1 million. Probably none of it covered by insurance.

"It's considered experimental," says Shahanaz
Argumand, who works for CHAMPS, a New York group that tries to help families facing medical crises.

The Begs keep their minds off the inevitable by clinging to the hope offered
by Duke -- and by the constant need to care for Abeerah and Khansa, demands
that fall most heavily on their mother.

"She doesn't sleep, she just keeps going," Zarrar Beg says of his wife.

"I don't know how she does it."

His wife, a devout Muslim, says she is just practical.

"If I collapse, then what happens? Things wouldn't get any better."

The young mother says she doesn't dwell on the inevitable. When she thinks
of it, she just reminds herself -- and her husband -- that caring for their
children now guarantees them a place in heaven.

"Our little girls are our gates to paradise," she says. "They will let us
in."

Bob Braun's columns appear Monday and Wednesday. He can be reached at
rjbraun@webspan.net or (973) 392-4281.

Bergen Record

Exceptional Parent Magazine

MPS AWARENESS DAY