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Angel Parents deal with daughter's diagnosis |
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Above, Samantha Pointer grabs hold of her mother's finger after receiving her medicine. Samantha was diagnosed last week with Angelman Syndrome, a genetic disorder. Left, 14-month-old Samantha receives one of her six daily doses of medication Wednesday morning. Samantha has to be given her medicine and fed through her stomach. |
| Right, Melissa Pointer holds her daughter after Samantha was given a breathing treatment. It is estimated that between 1,000 and 5,000 people in the United States and Canada have been diagnosed with Angelman Syndrome. |
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The petal-soft skin, trusting eyes and pink mouth give Samantha Pointer the face of an angel. She's a beautiful little bundle wrapped in a pink jumpsuit -- a gift from God, said her mother, Melissa Pointer: But the gift arrived five weeks early, and the now 14-month-old Samantha had a host of alarming symptoms that remained undiagnosed until last week. After months of medical testing and repeated trips to Cook Children's Medical Center in Fort Worth, a chromosomal study showed Samantha was missing a portion of her 15th chromosome. She has Angelman Syndrome, a genetic disorder named after Dr. Harry Angelman, who first published research on the subject in 1965. According to information from the Angelman Syndrome Foundation, the disorder is characterized by severe developmental delays in motor skills and speech. Frequent seizures typically occur before age 3.
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Melissa Pointer and her husband, Joe, waited for their 3-month-old daughter to hold her head up, but it didn't happen. "Her head would suddenly drop, like she had run out of batteries," her mother said. The Pointers held their baby as ber whole body shook with seizures. They took her to Fort Worth to have a kidney stone removed when she was 10 months old. The couple mand another trip to Fort Worth in January for surgery that would allow Samantha to be fed and medicated through her stomach. Still the 14-month-old cannot sit up, crawl, walk or talk -- but she captivates with her smile as she rolls onto her side. |
Photos by Lara Meckfessel And her parents, who have struggled with the question "Why?" now know what to expect and can move forward. Melissa Pointer said her daughter should be sitting upright and crawling by age 3. By the time she is 6 to 8 years old, she should be able to walk short distances. Her speech will belimited to a few words. "This will be a lifelong thing for us and for Samantha," Pointer said. "It (Angelman Syndrome) doesn't shorten life span. She'll never live independently." Pointer said she has gone through a time of mourning -- a letting go of some hopes and dreams. "Samantha was a planned baby," Pointer said. "I had all these dreams. I was going to plan her wedding and hold my daughter's first baby. Now I've has to put that aside and look at what I have."
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Although Samantha is 14 months old,she is still unable to sit up or crawl. By the age of 3 she will probably be able to do both. |
| Melissa Pointer sheds a tear when she thinks what the future might have been like if Samantha had been born healthy. |
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And what she has, Pointer said, is a joyful, tender baby, whose smiles and laughter capture the hearts of those who meet her. "God knew who he was giving her to," said Brenda Myers, Melissa Pointer's mother. "She is very loved. As long as we take this day by day, we're OK, but once in a whild future thoughts sneak in on us, and we just cry," Myers said. Joe Pointer works for Ameripol Synpol. "We have good insurance and are a middle-class family," Melissa Pointer said. However, when a catastrophic illness strikes, medical bills are overwhelming. "A 20 percent copayment on hundreds of thousands of dollars is a lot of money," Pointer said. "And paying $20 or $30 for a perscription sounds pretty good, unless you have to buy six prescriptions every month." Add travel expenses and long-distance telephone calls when specialized medical help is not just around the corner. Because Joe Pointer has a well paying job and medical insurance, the family doesn't qualify for Medicaid. And the costs continue to mount. |
Myers said the family has applied for Supplemental Security Income (SSI) for Samantha, and if they qualify for that, then she will qualify for Medicaid as well. In the meantime, the family is counting its blessings. "I have my mom and my mother-in-law to help me out anytime I need a break," Pointer said. Church families and friends also have provided emotional support. Bonnie Esman has known Brenda Myers for years and attends the same church --Friendship Baptist in Odessa. Esman works from her home creating Web sites. She has created a web site for
Samantha: Esman said that by linking Samantha's Web site to others, she has created a worldwide network of prayer for the little girl. "Prayer works," Esman said, "and people all over the world have foined together to pray for this child. With the Internet, the whole world can become a community. It's a powerful thing when you know that many people are praying for you." Esman said she has had to delete messages from the site's guestbook because the site has had so many visitors. "There are a lot of people in this world who care. Some people send a dollar or a card, and that gives hope. The family needs all kinds of help, but Samantha needs our prayers. This is the only way I know to help," Esman said. Janet Coleman, a member service representative at Southwest 66 Credit Union, is a friend of Joe and Melissa Pointer. She has set up an account in Samantha's name to help the family with their mounting expenses. "Joe and Melissa are not questioning 'why' anymore," Coleman said. "Now the question is 'How can we work to make things better for Samantha?' " A bitter sweet irony is that the Pointers have called their daughter "our special angel" since her birth. |
In a photograph of Samantha taken before the diagnosis was made, the baby ----dressed in a white gown with gossamer wings peeking over her shoulder ---- gazes innocently at the camera. Melissa Pointer said there are days when she feels overwhelmed by what lies ahead of her. "But the blessing is that I have a precious, beautiful baby girl who is touching so many people's lives. This makes me slow down and enjoy life and re-evaluate what is truly important," she said. "And the blessing is that suddenly you realize you're not all alone in the world anymore, and you can face the challenge," Pointer said. Donations to the family of Samantha Pointer can be made at Southwest 66 Credit Union, 4041 E. 52nd. In addition, The Hideaway, at 5711 Andrews Highway, is hosting a fundraiser for the family today from 2 to 8 p.m. with food, entertainment and an auction. For more information on today's fund-raiser; call 362-8244. |
