Support group reaches out to parents of special needs kids

Sometimes when life throws a curveball, a person needs the help and understanding of others.

In January, Summerlin Hospital Medical Center, 657 N. Town Center Drive, began offering a monthly support group for parents and caregivers of children with serious medical conditions.

The support group, called Special Care ... Special Kids, was formed by Misti Albright. It meets the last Tuesday of the month and plans to meet from 6:30 to
7:30 p.m. today in the hospital’s first-floor conference room.

The support group is specifically for parents/caregivers of children with special needs. Children do not attend meetings.

For more information, call 702-233-7000.

Albright said the first sessions showed how eager parents were to share experiences and learn of agencies to contact.

“The greatest question they have right now is resources and the need for help, for respite care and insurance help,” she said.

Special Care ... Special Kids’ first three meetings had no speakers but were more of a “getting to know you” evening. Speakers are being planned for future get-togethers.

Tonight’s meeting is set to cover meditation and how it can be used to de-stress. The May meeting is set to cover respite care and will be presented by the Foundation for Positively Kids.

Albright said she started the group because she saw a need for it. She is a Neonatal Intensive Care Unit nurse at Summerlin Hospital whose third child, Grayson, has special needs.

Her pregnancy proceeded normally until a prenatal screening came back with a high probability of Down syndrome.

“I was measuring small my entire pregnancy,” she said. “But when he was born, we just thought he was small.”

At 3 months, he stopped eating.

Her son underwent surgery to place a feeding tube in him. He also has had a hernia operation. Genetic testing showed that Grayson had Russell-Silver syndrome, a form of dwarfism that often presents with a distinctive triangular face, low-set ears and curving fifth fingers.

“It’s really rare, a 1-in-100,000 birthrate,” Albright said.

Grayson will turn 2 in June. He is the size of a 6- to 9-month-old child and weighs 17 pounds. He attends therapy 21 times a month, so often that Albright has had to cut back her work schedule to only a few days a month.

Online research led Albright to The MAGIC Foundation, which allows her to talk with other parents whose children have Russell-Silver syndrome. As a result, she decided to start Special Care ... Special Kids meetings and approached Summerlin Hospital, which came on board and provides the meeting room and refreshments.

Carol Wright attends the meetings. Her daughter, Madisen, 11, has lobar holoprosencephaly, cerebral palsy, microcephaly and diabetes insipidus.

“My husband and I had been trying to have a baby for about four years and nothing was happening,” Wright said.

Amniocentesis showed nothing was wrong, but a later scan hinted at a facial deformity.

“They said, ‘Oh, it’s just a cleft lip and palate. That’s just plastic surgery, but she’ll be fine,’ ” Wright said.

Madisen was born at 36 weeks gestation. She was in the NICU for four days. It was at the plastic surgeon’s office, about two months later, when the Wrights learned that there was more to Madisen’s condition.

Holoprosencephaly means the brain has not developed properly. It affects children differently. Madisen has poor trunk support, no head control and pulmonary issues, and she cannot walk or talk. Caring for her is especially taxing because Madisen’s condition means she is awake 24/7. Carol and her husband, Vern, take turns “sleeping” in their daughter’s room, jumping up to clear Madisen’s passageways when her breathing becomes compromised or to attend to her other needs.

“I get about three hours’ sleep a night,” Carol Wright said. “Four, if I’m lucky.”

She said the constant care has meant that her friends have “disappeared.” She was laid off, and that led to further isolation.

Madisen was initially given a year to live, “but we fooled them,” her mother said.

The family takes Madisen to see specialists in California. There, they attend a support group for parents with special needs children. Wright got a list of medications from another parent that they found effective and took it to her doctor to see if Madisen would also benefit from them. She did. Another parent advised her to stop a medication that had side effects similar to speed and ask the doctor for a replacement medication that Wright had never heard of before. Again, Madisen benefited from the firsthand knowledge.

Wright said she’s grateful a support group was started in Las Vegas.

“For me, it’s more about friendship,” Wright said. “The friendship is really big. It’s very hard to do this alone, and I did this for nine years. When you find people who are just like you, nobody understands what you’re going through except another (special needs) parent.”

Where would Albright like to see the group in a few years?

“I would hope it gets big enough to divide into categories –– feeding issues, muscular issues –– I’m really happy that every month we’re seeing growth,” she said.

Contact Summerlin/Summerlin South View reporter Jan Hogan at jhogan@viewnews.com or 702-387-2949.