Anabelle's Wish - Phone

Anabelle's Wish helps children and families struggling with lissencephaly and/or other rare neurological conditions. Read more about us at www.AnabellesWish.org

Anabelle Rose was born on May 12, 2010, with both Microcephaly and Lissencephaly Type 3. She spent the first two months of her life in a neonatal intensive care unit before she was able to come home to her loving parents, Brian and Kate Linzey, and big sister Elyse.

Anabelle can hold her head up only briefly and does not reach or roll over. Due to central visual impairment, she is considered legally blind, but she has wonderful hearing and enjoys the voices of her family and nurses as well as listening to opera. She functions on the cognitive level of a 1- to 2-month-old, depending on the skill area.

She is fed through gastronomy tube directly into her stomach; four times a day she requires catheterizations to assist with impaired urinary elimination. Because of her central sleep apnea, Anabelle must sleep with oxygen. Like many children with lissencephaly, she has a secondary diagnosis of cerebral palsy.

Kate and Brian have done an astonishing job of keeping Anabelle relatively healthy and comfortable while coping with the numerous day-to-day challenges.

They are incurring significant costs because of extra utility expenses, special clothing and equipment, and time lost from work.
Future needs may include a home that’s more suitable and a specially equipped van.

Anabelle’s Wish will help a child and a family struggling with lissencephaly -- one family at a time -- by providing resources and support.

We are starting with the extraordinary Linzey family, who are residents of Delaware County.

Microcephaly is a neurological disorder in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Approximately 2 percent of children born in the United States each year are diagnosed with microcephaly, more than are diagnosed with autism.
Children with this disorder may have some degree of mental retardation although in 15 percent of the cases, the child will have normal intelligence and continue to develop and meet regular age-appropriate milestones.
Early childhood intervention programs that involve physical, speech, and occupational therapists help to maximize abilities and minimize dysfunction. Medications are often used to control seizures, hyperactivity, and neuromuscular symptoms.

Lissencephaly, literally “smooth brain,” is a rare, gene-linked brain malformation characterized by the absence of normal folds in the cerebral cortex.
Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, and severe psychomotor retardation. Seizures may be particularly severe but anticonvulsant medications can help.
The prognosis for children with lissencephaly depends on the degree of brain malformation. There is no cure for this condition, but children can show progress in their development over time. Supportive care is usually needed to help with comfort, feeding, and nursing needs.

Microlissencephaly is the term applied to children who have both lissencephaly and microcephaly disorders, an extremely rare occurrence.

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