Recently, we were contacted by a wonderful family from the Netherlands that informed us that their brother (in law) has Wolf-Hirschhorn Syndrome. Today, Jaap is alive and is 58 years old, and could very well be the oldest Wolf-Hirschhorn male alive that we know of. They were kind enough to tell us of his wonderful story. Here it is…
Jaap was born on May 11th 1955 in The Hague, the Netherlands, after a pregnancy of 39 weeks. Except from a viral corneal inflammation halfway, there were no complications with this pregnancy. His birth weight was 2550 grams and his length was 47 cm (small for date). After the uncomplicated delivery, he stayed 1 week in an incubator. While his parents (and 7 years later, I) had brown dark hair and brown eyes, as only member of the family he has blue eyes and blond curly hair. During his first years of life, he suffered often of lower and upper respiratory infections complicated by (grand mal) seizures. Therefore, he used medication to reduce the amount and severity of these seizures. The frequency of these seizures diminished after he reached the age of 17 years, and since the age of 25 there are no signs of epileptic activity and Jaap doesn’t need any further medication.
His mental and physical retardation became clear around 1 year of age, because he didn’t start to crawl or walk. Many medical investigations were performed during the late fifties, including neurological investigations which revealed epileptic activity. During these times, there were of course less diagnostic techniques than nowadays. Jaap was diagnosed with Wolf Hirschhorn in 2001.
His speech developed slow and poorly. He learned several words but could only be understood by his parents and the rest of his family. Eating has been a problem from the beginning. He still often refuses to eat and it takes a lot of effort to make him eat. It is not clear if this is behavioral of constitutional.
It became clear that Jaap has some degree of autism. Most prominent feature was/is physical defense.
It’s important for Jaap that his daily routine is clear. He thrives on structure. Unpredictable situations can lead to agitation. When he was younger, it led to mild physical aggression (scratching and grasping other people).
His parents tried everything to help him to develop further. They had to work very hard for the most simple things because of the lack of expertise and knowledge at that time.
When Jaap was 13 years of age, his parents found a special daycare for Jaap.
At one point Jaap’s parents became aware of their physical limitations. At the age of 18 Jaap started to visit a short-stay home during the weekends. This was a difficult decision for his parents, but Jaap accepted the new situation. At the age of 19, they found a permanent location for him to stay. His parents stayed very involved in his life.
Jaap’s father passed away in 1996 ,and his mother in 1998. Me and my spouse had to take over the care for Jaap.
Nowadays, Jaap still needs 24/7 care. He lives in a small community in a house with 10 people. He has is own room and likes to watch TV when he is free from his “work”.
He is in good health but his well-being must be monitored constantly.
He visits us and other friends and family regularly. We maintain his social network by keeping contact with everyone. Once a year we organize a big birthday party for Jaap to thank everyone for their involvement.
We hope his parents are proud of us about the way we take care of him now. We don’t see Jaap every day but he is always on our minds. Without Jaap our lives would not be the same and less rich.
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My granddaughter, also, shares a common bond with Jaap and you. We will never meet but I want you to know there are NO words to express the feelings your entry touched within me. Few know this unique love we share with our special children and within this community. Every day I am baffled with what I learn from her. Blessings to you and especially to Jaap today and all the days that lie ahead.
Grandma R
Japp reminds me of our little Frankie, age 4 with his curls and blonde hair, diagnosed with WHS, almost from birth. These children are miracles and blessings. Thank you for sharing. Nana
Thank you for sharing your story! Hello Jaap and family. Fiona (2.5 yrs) and family say hello from the U.S.
Thank you for sharing this wonderful story about raising a child with cognitive disabilities in a loving home at a time when children with CD were usually institutionalized from birth. It also challenges our existing information about WHS, which is probably built on what was known of institutionalized individuals. The story reveals so many common themes of life with WHS. Like Jaap, Rochelle grabs and scratches (faces) when she is frustrated. The photos tell their own story of Jaaps inclusive life style and how he continues to thrive. Jaap’s post filled my day with hope.
Hello from Texas,my sister Rosa WHS 52yr & will be 53yr in April 2014.Born 1961, lives today in San Antonio,Texas. Loved to hear of yet another whs person older than my sister is still living. Great News for our WHS kids. My son Aldrick has whs & so does his aunt Rosa,and she is doing well.
I’m so grateful you shared Jaap’s story with us. Especially as the mother of a son (because I am unaware of many adult males with WHS), I am very excited and encouraged to see this. The photos of Jaap’s parents looking at their son with so much love are beautiful. Also I can’t help but smile when I notice his crossed legs in the second to last photo! It does seem to be a favored position. And I had to laugh as I read the comments, thinking “oh wow, how did I not know there was another four-year-old named Frank in our group?!” Then I realized it was my mother-in-law! 🙂
Thank You for sharing
What a beautiful and inspirational post. I love that there are so many pictures for us to see through his life. So encouraging to see not just the age he’s living to but how rich his life is and how he enriches others! That’s an annual birthday party I sure wish I could attend;). Hello new Netherlands friends!
Wow. This is a great story. Will he attend this years 4p Conference? I know its quite a distance.
Thank you so much for the story of this wonderful man . I’m always wanting to learn more about WHS so that it may help us with our Grandadughter Skyler (2001) .
Thank you for this wonderful story. I am so glad to know that he is doing so wonderfully.
Gracias por compartir, desde sonora. Ana victoria con 5 meses de vida es recientemente diagnosticada SWH y me parece muy bien leer estas historias que me dan animo por que con amor es la lucha de este camino. son una gran bendicion estamos en cero sobre este sindrome y gracias a ustedes conocemos un poco mas
God is good ♥♡♥
My daughter Josephine was diagnosed at birth it was confirmed when she was 3 weeks doctors told us she wouldn’t make it past here she is 9 over all healthy and happy always with a smile u give all us parents hope thank u I have found a parent who’s child has the same break in chromosomes hers is 4 and 12 love to all thank you
Thanks for sharing this story. We live in Point Texas, my daughter is 34 and this story is inspiring and uplifting. We are part of a truly special group of people, our WHS Family, and yes our children are much more the a number, they are loving and absolutely resilient with a determination we all should strive for. I know now, I am who I am because Crystal molded me and those lucky enough to allow her to do so.
Thank you for sharing this wonderful story about Jaap. I am a grandmother of a 3 year old girl with whs. As others have expressed, these children are so lovable and beautiful. She gives us so much joy when we babysit her. It is amazing how hard they must work to achieve anything. Jaap gives us hope for our granddaughter. Greetings from NY, USA.
Gracias por compartir esta gistoeia , nos da alisiente para salir adelante con, nuestros niños especiales, mi hija ya tiene 17 años esta muy bien vive con nosotros sus padres ella tiene SWH. Bendiciones para jaap que dios lo tenga por muchos años mas, los diagnosticos lapidarios de los medicos muchas veces estan totalmente alejados de la realidad.
Gracias por compartir esta historia tan hermosa , nos da esperanza para salir adelante con, nuestros niños especiales, mi hija ya tiene 17 años esta muy bien ,vive con nosotros sus padres ella tiene SWH. Bendiciones para jaap que dios lo tenga por muchos años mas, los diagnosticos lapidarios de los medicos muchas veces estan totalmente alejados de la realidad.
Hola que hermosa historia me encanto la verdad me puse algo triste el 15 de mayo nació mi princesa Leah Amaya y partió al cielo el 26 d mayo, desde que tenia 24 semanas de embarazo supimos que algo no estaba bien y semanas después me hicieron una amniocentesis y resulto que mi niña tenia este hermoso síndrome, nació a las 38 semanas peso 1560gt y midió 39 cm, tenia agenesia de cuerpo calloso, 2 malformaciones en su corazón las cuales no ayudaron a sobrevivir y murió,ella tan hermosa lucho tanto por su vida pero Dios la quiso con ella sin embargo siempre pienso en ella toda la vida esta en mi corazón y en mi mente…me encanta leer estas historias donde los bebes llegan mucho mas allá de los pronósticos esta experiencia es lo mejor que me pudo pasar me cambio mi vida y me abrió los ojos a vivir mas y a ver lo hermoso que son estos seres. Dios siga llenando de bendiciones a estos seres hermosos y a sus familias. Saludos desde Guanajuato, Mexico
I support a gentle man with this syndrome, he is 54 years of age, still mobile and able to do lots of his own daily activities. He is an amazing man and never stops surprising me. He has a naughty sense of humour, is nosey and loves to know everything that’s going on.
I am curious whether anyone else is so active, he walks constantly, he is independent as much as he is capable for example dressing and undressing, eating, drinking and he communicates clearly what he wishes to say. Not verbal communication but he can make clear his message. If anyone can give me any information that would let me carry out some research I would be very grateful.
This is such an inspiring and uplifting post about someone with WHS, and you have truly lifted my spirits.Our beautiful and amazing son has WHS and most the posts I read leave me feeling quite dismal about what the future holds for him and I refuse to believe his future will be anything but amazing, like him. Your story is the first I’ve read that gives me hope and leaves me smiling. Thank you from the bottom of my heart for sharing and for giving me the heart lifting hope I need that everything will be ok.
Hola, mi niño fue diagnosticado con el síndrome de Wolf a los 2 meses aproximadamente. Ahora tiene 4 años de edad y está hermoso. Aún no se sienta por sí sólo ni camina, pero afortunadamente está sano. Somos de Mexicali, Baja California. Me gustaría contactar a alguien cerca de nuestra ciudad o estado para intercambiar nuestras experiencias o compartir recomendaciones.
I was wondering this morning if my stepson Dylon was the oldest living man with this unique syndrome. Dylon is 28 and we live in London Ontario Canada, raised solely by his mother for the first 16 years of his life, who does a fantastic job caring for him.I just thought I’d say hi fir him!!
Thank you so much for sharing Jaap’s story. I have a client who is diagnosed with Wolf-Hirshhorn and I wanted to learn more. I appreciate this real-life insight.
My daughter Amy has Wolf-Hirschhorn syndrome she will be 40 in march 2023