My beautiful daughter Justine has WHS or Wolf-Hirschhorn Syndrome also called 4p- syndrome. This is a partial deletion of the short arm of chromosome 4. This can cause very slow growth rates both in utreo and continues after birth, heart defects, clefts of the palette and lip, seizure disorders, feeding issues, bone problems, kidney problems, physical challenges (inability to walk, sit, crawl, or even roll) some do it all, mental challenges some more severe then others, can also affect life span. Given the span of problems that can occur I have been very fortunate Justine has had relatively few issues.
My beautiful daughter has taught me so much about unconditional love and happiness she finds joy in the simplest things a light, sunshine, person, food, flower, a question. She is bright and inquisitive if she has been to your house once she will remember it and will often get excited as soon as she sees where she is at. Justine has had her rough moments, times when I didn't know if she was going to make it through a night or day, but she has lived her life to the fullest every day of her life. She has learned how to overcome many obstacles, hurdles and has made so many milestones. My beautiful daughter is a major part of my world and has molded me into the parent I am today, she taught me how to fight for her, and as a result I have been able to fight for my other children when they have needed me to do that.
Life is an adventure and no 2 days are the same. We have met and developed friendships with people all over the world with one common bond our special children. With each meeting and visit with another parent there are similarities and differences, but each one is unique in what they can/will do and when they will do it.
With Justine's issues she has had with her syndrome the best thing I have found to be the most helpful has been Botox injections and water therapy the pool is kept at 92 degrees and is the best place to do stretching exercises, prior to her doing water therapy Justine was requiring Botox injections in her legs every 6 months to 18 months the better the stretching and consistency of those exrercises the less frequently she has needed the Botox injections. At this point in time it has been close to 3 years since her last set of injections and that makes both Justine and I very happy. Botox is a wonderful thing and made it possible to avoid a hamstring release surgery which had a high percentage chance that she could have ended up in a wheelchair permanently. Justine likes the freedom she has with being able to go where she wants to freely. /after reading about Botox injections being used in people with spastic cerebral palsey I asked about it when I had Justine into see the prthopedic doctor. I talked her orthopedic doctor into trying it even though he said he didn't like it because it was a temporary fix my daughters left leg was bent nearly 90 degrees after the injections when we had her legs nice and relaxed in a warm tub we would gently stretch her legs by the time she went back for her first checkup 30 days after her injections she was within 2 degrees of being straight. This was the answer for her it is the best thing I have fought for and gotten. Now with her legs being straight and as long as the water therapy is continued on a regular basis she probably won't need the Botox for a long time to come, she will always require therapy exercises and if we can't get in a pool we do land exercises instead.