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Just as every typical child is different, every child with the 22q11.2 deletion will have different medical and developmental needs. With this in mind, children with the deletion need care by appropriate specialists, but in addition, it is often helpful to be seen by a medical team to receive coordinated care. While there is no “cure” for the 22q11.2 deletion, there are ways to manage the problems it causes, and the earlier the symptoms are detected the better.

Early Intervention

Intervention can come in one of two ways: private therapy, with or without insurance coverage, or early intervention services through the state or county. Early intervention can be requested by a pediatrician or other health care provider or directly by parents. The evaluation includes a team approach with specialists involved from speech and language therapy, physical therapy (PT), occupational therapy (OT), special education, etc. If a child qualifies, the services are generally free of charge, depending upon your state of residence.

If your child does not qualify, you may want to consider private therapies. In addition, children can always be reevaluated later, as in many states, there are two age defined programs offered: Birth to 3 years and 3 – 5 years. Children enrolled in Early Intervention will have a written plan of services and goals. Parents should be invited to participate in meetings to develop these goals. Parents are partners with the professionals in writing these developmental goals for the child. It may be intimidating to be with multiple professionals, so it is wise to bring along a friend, spouse or other relative, as it is always useful to have another set of eyes and ears.

One Family’s Experience

Our son, John, is a happy, funny, and lovable eight year old who enjoys his trains, computer games and occasionally tormenting his little sister. When we look back and think about the hours of waiting during his two open-heart surgeries, his difficult birth, and his month-long stay at Children’s Hospital, it’s almost impossible to comprehend that it has just been eight years. John has been through a lot in his short life, but he has always been a trooper. We often think about how relaxed and comfortable he is for every doctor’s appointment or hospital visit. No matter what he has to face, he makes the best of it. John has changed and developed so much in eight years, which has been at times joyous and at other times difficult. A lesson worth learning for us has been that when things get difficult, we always think back over those eight years. We reflect on all that John has been through, and try to focus on all the progress he has made. We can’t predict the future, and we know that John has many hurdles to overcome down the road, but at this stage, we try to take every day as it comes and enjoy each day.

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At the International 22q11.2 Foundation we help families that need important resources and information to meet the needs of loved ones with 22q.

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