2月 之前
Hi, I’m Isabella…and I was born this way. Born to love and to conquer fears, born to unify uniqueness, born to magnify the love between my family, born to Pinterestpire ignorance to understanding, born to learn…to wonder…to wish…to be. I’m unique not just because of my internal power but also because I have Wolf Hirschhorn Syndrome. A condition that is part of me but doesn’t define me. * Please read along to learn more about Isabella’s diagnosis. Today is Wolf Hirschhorn awareness day so we want to share a little bit more with all of you! Please comment if you’d like and I’ll be sure to read them out to Isabella❤️?❤️. Happy WHS Awareness day!!! * Wolf-Hirschhorn syndrome (WHS) refers to a condition that is caused by a missing part (deletion) of the short arm of chromosome 4. * The incidence of this condition is rare and estimated to be approximately 1 in 50,000 births. This missing genetic material results in developmental delays, a characteristic facial appearance, and may include a variety of other birth defects. Other significant problems can include heart defects, cleft lip and/or palate, hearing impairment, kidney and eye problems. Because of the wide range of deleted material, possible duplications and translocations, the effect on each child varies. Larger deletions does confirm that more genetic material is missing but may not necessarily mean more significant delays. Some can walk, talk and assist in their daily care while others are not verbal and require constant care. Smaller stature is dominant yet some are near average height and weight. * Most children who have WHS have seizures (approximately 90%). Approximately 85–90% of cases of WHS occur as the result of a new deletion in the affected individual. * A common trait seems to be that the children are happy, very social, and have a huge love of music. They communicate well (some without spoken words) and capture the hearts of many. With therapy based early intervention and the love and encouragement from the parents/carers, nothing seems to be impossible for our kids. * #bellaisabella#wolfhirshhornsyndrome #四號染色體缺損綜合症 #whstrong#nardonegirls #whsawarenessday