The vision behind wolfhirschhorn.org is plain and simple: to give current parents a place to share their stories and for new parents to hear the real story. Most Doctors and Geneticists rely on research and can only provide information from books and literature. The real story encompasses the lives of those children that live it day to day.

To hear it first hand, watch this video.

 

 

9 Responses to Why

  1. Deanna Delgado says:

    Hello,, new to this particular site. I have a daughter Tailee ,who was diagnosed with pitt rogers dank syndrome as a young child. Tailee is now 18, she talks,walks and has never had a problem eating although when she becomes ill she does have a terrible gag reflex ~ she weighs 58lbs.. I guess my question would be are there other older children you are aware of or have been diagnosed with this branch of WS ? We also have a son 21, who has Autism/ with a deletion of the #8 cromosone. Just wondering if there is anyone out there like us?? Thank You, Deanna Delgado ps.. My son and daughter have a best friend named Kendall!

  2. joannicita says:

    hi! i am also new to this site! I am seeking a wolfhirschhorn family with a young adult, my son dillon is 17yrs old and was diagnosed at birth with the wolfhirschhorn syndrome. please let me know if you know of any families, Thank you very much!

  3. Eva Viera says:

    Hello..My son Aldrick is 24 yrs old w/WHS,he weighs 45 lbs and he has atrial septal defect in his heart,seizures,immune deficiencies,endocrinology problems,poor balance but walks,non verbal,does not chew,drinks n loves ensure, and have been able to keep him off a feeding tube for all 24 yrs!He has never been thru puberty,has his baby teeth, no cavities,still wears huggies diapers size 6,He understands 2 languages,english and spanish,understands commands, I can sit him in the commode in mornings to have a BM,he loves to play with balloons,balls,and all his toddler musical toys..he also enjoys going to listen to bands play,will move to the music,and has to be by the huge music speakers..that is his love! My husband and I have never taken a vacation w/out him,he goes everywhere with us,and we want him to see and experience everything that life brings.There has been many close calls where he’s been hospitalized,pneumonia,bronchitis,uncontrollable seizures,skull fracture and 4 day coma from a car accident,septic from ruptured appendix, PICU, heart stopped..but he has a great big will to live and has survived all that, Thanks to God!! He has made me a strong person, and I will be with him all the way, he is the LOVE of my life! (I also have an older daughter 30 yrs) By the way, I grew up with my sister who also has WHS and she was born in 1961..today she is 50 yrs old and still thriving!Thanks for listening!

  4. Simone G. says:

    Hello all… I’m Simone and I’m looking for information regarding WHS support group in Seattle area. A wonderful friend of mine who has a beautiful boy got two days ago the news, over the phone, that her 12 months old cute boy was diagnosed with WHS. As her friend and huge fan of her son I want to help as much as I can. If anyone knows support group, any kind of organization around Seattle area, please send to me, I beg. My e-mail address is spg.adds@gmail.com I need to get informed in order to help her. I deeply appreciate. Best regards to all! Simone

  5. Jazz says:

    Hi there,
    I’m from Melbourne area, Victoria, Australia.
    I have a 5 & a half years old daughter Ariarna she was diagnosed with WHS before her 2nd birthday,
    she just started walking at the start of this year, Ariarna no longer use’s a walking frame, but use’s AFO (foot & leg splints) & can walk on her own, she barely talks very simple small words but understands so much more then she lets on, trying to teach her signing but it has been hard with her hearing & eyesite issues, she is currently trying to toilet train, Ariarna has hearing aids, has ear gromots, wears glasses & is on epilim for sezuire control, Ariarna has had 11 operations so far, she is currently a very cheeky, lively, loud & semi-independent girl :-)
    I’ve heard the oldest WHS patient lived to 40 years of age was wondering if this prognosis is true?
    We are also looking for other parents within Victoria Australia with WHS children.
    Kind regards Jazz & Joe

  6. Jazz says:

    Sorry I meant to say the oldest person with WHS I’ve heard of living within Australia was around 40 years of age, by the way we haven’t heard of or met anyone in Australia yet with a child or family member with WHS everyone I’ve met has been online & from the USA, also our daughter WHS was a one off occurence & not genetic.

  7. Michael says:

    What can I say? Visit my daughter Joselyne and makes you yourself a picture. WHS is to endure terrible and very difficult. For the children, as well as for parents who give up everything and life change as it used to. Unfortunately in Germany lack the algmeine understanding for parents who have children with disabilities.
    Josy should not be 2 years old, she is now 5 years old. I think that says it all.

    We love you and protecting, as best I can and as long as it takes.
    http://www.joselyn.de

    Sorry for the bad English, but I’m working with a translator :-)

    Was soll ich sagen? Besucht meine Tochter Joselyne und macht Euch selber ein Bild. WHS ist fürchterlich und sehr sehr schwer zu ertragen. Für die Kinder, wie auch für die Eltern, die alles aufgeben und das Leben, so wie es mal war umstellen müssen. Leider fehlt in der BRD das algmeine Verständniss für Eltern die Kinder mit Behinderungen haben.
    Josy sollte keine 2 Jahre alt werden, sie ist jetzt 5 jahre alt. ich denke das sagt alles.

    Wir lieben und Beschützen Sie, so gut es geht und so lange wie es dauert.
    http://www.joselyn.de

    Entschuldigung für das schlechte Englisch, aber ich arbeite mit einem Übersetzungsprogramm :-)

  8. Story from jazz and joe above I’m in perth Western Australia. Please email me have information for the next Australian wolf hirschorn syndrome support group conference being held here in perth xx please contact me xx sam

  9. Olga says:

    Hello! I’m from Russia. Sorry for my English – I translate through a translator . According to the results of genetic analysis , my son has Wolf – Hirschhorn Syndrome. He is 1 year and 5 months. In Russia we have very little information on this syndrome and are not given much hope. I translated articles from your country and realized that there is a chance of a good outcome .My son has the following: severe stunting ( 1.5 at his age , he looks 5-6 months) , in my experience mild mental retardation ( but I do not know exactly ) , coloboma , hypospadias , pipoploziya kidney gipoploziya the corpus callosum , mild microcephaly, epilepsy ( not an established form of epilepsy , and possibly two ) , characteristic facial features ( Greek warrior helmet ) , high palate , dysplastic ears, muscle hypotonia . At the moment he sleeps on his front, sits with support , has 8 teeth , tries to chew, opens his mouth at the sight of the spoon , he responds to laughter , not to say a good appetite , vision and hearing as a healthy person .
    Here is my email skvor4ik88@mail.ru – I will be very glad to communicate with any families !

    Здравствуйте! Я из России. Извините за мой английский – я перевожу через переводчик. По результатам генетического анализа, моему сыну установили синдром Вольфа-Хиршхорна. Ему 1 год и 5 месяцев. У нас в России этот синдром практически не изучают и не дают надежду на хорошее . Я переводила статьи из вашей страны и поняла что есть шансы на хороший исход. У моего сына следующие повреждения: сильное отставание в росте (при своём возрасте 1,5 года он выглядит на 5-6 месяцев), по моим наблюдением легкая степень умственной отсталости (но я не знаю точно), колобома, гипоспадия, гипоплозия почки, гипоплозия мозолистого тела, умеренная микроцефалия, эпилепсия ( не установлена форма и возможно две эпилепсии), характерные черты лица (Греческий воин шлем), высокое нёбо, диспластичные ушные раковины, гипотония мышечная.На данный момент он переворачивается со спины на живот (обратно не может), сидит с поддержкой, имеет 8 зубов, пытается жевать, открывает рот при виде ложки, реагирует смехом на речь, не говорит, хороший аппетит, зрение и слух как у здорового человека.
    Вот моя электронная почта skvor4ik88@mail.ru – я буду ОЧЕНЬ рада общению со всеми семьями!

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