Meet Our International Ambassadors

Christine ist im Juli 1980 im südlichsten Teil Sachsen-Anhalts geboren und dort auf dem Land aufgewachsen. Sie hat einen pädagogischen Beruf erlernt, später als Hundetrainerin und in der tiergestützten Therapie ehrenamtlich gearbeitet. Christine liebt Tiere und die Natur über alles und ist eigentlich ein echtes Landei. Außerdem kocht und backt sie gern. Vor kurzem hat sie wieder mit dem Nähen begonnen.

Zusammen mit ihrem Mann und 3 Kindern lebt sie in einer Gemeinde namens Stahnsdorf, zwischen Potsdam und Berlin. Dort kümmert sie sich hauptsächlich um Haushalt und Kinder. Christines jüngster Sohn Rouven ist ein SONnenschein und wird von ihr rund um die Uhr betreut. Er wurde im September 2016 geboren und im Februar 2019 kam die ZTTK-Diagnose.

Aufgrund der Erfahrungen und Fragen, die im Leben einer Special-Needs-Mom entstehen, hat sie eine Gruppe für pflegende Mütter — Special Needs Moms Potsdam und Region — gegründet, die sich regelmäßig in einem gemütlichen Restaurant trifft und für jedes neue Mitglied offen ist. Christines Motto ist stets "Nicht jammern! Ändere etwas!" Den Kopf in den Sand stecken kommt für sie nicht in Frage.

Reem Hamade is an English teacher with a Master's Degree in Education: Teaching English for Students of Other Languages (TESOL). She has eight years of experience in teaching different students of different levels. She has always believed that all children are unique and have something special that they can bring to their own education and their own life. She is daily inspired by her dad, husband, and their two kids: Jawad and Yara. She is a positive person who always has a smile on her face no matter what comes her way. Reem never knew that she is that strong until Yara was born, and since then she dedicated her life to teach the world about Yara and change the world for Yara. Reem's goal today is to help the world learn about, accept, and celebrate different abilities through love and with great love.

Je m'appelle Nathalie Grataloup, j'habite près de Lyon, je suis mariée depuis 1994 et nous avons 4 garçons.

Notre second fils, Mickaël, né en 1999, est atteint du syndrome ZTTK. Comme il n'a été diagnostiqué qu'à 21 ans, nous avons dû vivre sans diagnostic pendant de longues années et avancer quand même, malgré cette errance médicale (ce fut difficile, spécialement lorsqu'il fallait compléter les dossiers administratifs liés au handicap, sans pouvoir mettre un nom sur sa maladie que nous devions du coup décrire le mieux possible pour être compris). Aujourd'hui, notre fils est adulte et nous sommes ses tuteurs (habilitation familiale) car il a un niveau psychomoteur évalué entre 18 et 36 mois.

S'il n'est pas malade, c'est un jeune enjoué, toujours content et très attachant. Il aime beaucoup marcher, observer et chantonner. Maintenant que Mickaël a grandi, il est moins souvent malade (ouf !). Il vit en établissement pour adultes handicapés (notification FAM) et nous le récupérons environ 3 week-ends par mois et pendant nos vacances.

Mon but aujourd'hui :
• faire mieux connaître le syndrome ZTTK dans le monde (via LinkedIn par exemple) pour que les équipes médicales s'y intéressent davantage, en sachant qu'il y a plus de cas dans le monde que ce qui est annoncé sur internet et, dans l'idéal, que les parents concernés trouvent plus facilement des réponses à leurs questions.
• Je souhaite organiser d'autres rencontres entre familles françaises ou européennes afin de faciliter nos échanges et surtout mieux nous connaître (j'ai déjà organisé un après-midi ensemble à Paris le 23/09/2023 et c'était très sympa de voir les sourires de tous nos SONshines !)

Je propose aussi de vous faire profiter de mes nombreuses années d'expérience ZTTK afin que les familles avec de jeunes enfants évitent nos erreurs, gagnent peut-être du temps et profitent aussi de ce qui a bien marché pour notre fils. Cependant, comme pour tout un chacun, chaque enfant ZTTK est différent et a ses propres besoins, donc ce qui s'est révélé vrai ou faux pour notre fils ne le sera peut-être pas pour les autres enfants ZTTK ⇒ mes conseils ne resteront donc que des pistes à explorer … ou pas ! 😊

Bună ziua,

Sunt Adela, mama lui Nicolo Pop, în vârstă de 4 ani și 3 luni. Eu am 37 de ani, m-am născut în România. Eu sunt absolventa Facultății de Medicină Dentară din România. De 10 ani eu și tatăl lui Nicolo (nu suntem căsătoriți) ne-am mutat în nordul Italiei. Aici, locuind într-un oraș micuț, am găsit de muncă doar ca asistentă dentară și lucrez part-time. Nicolo e unicul copil. Eu sunt o fire liniștită care vorbește puțin, din acest motiv vă scriu așa puțin. Vă mulțumesc pentru tot ajutorul care ni-l oferiți!

Member of the ZTTK Medical Advisory Board

Merhabalar, Ben Zahide Alaçam. Türkiye'de bilinen ZTTK sendromu tanılı 2 çocuktan birinin annesiyim. Türkiye'de Denizli şehrinde yaşıyoruz. Evli ve 2 çocuk annesiyim. Büyük oğlum Ömer ZTTK sendromu tanılı. Ben Göğüs Hastalıkları doktoruyum, eşim ise psikiyatri doktoru. Doktor olmam nedeni ile ZTTK son-shine vakfının hem Türkiye temsilcisiyim, hem de ZTTK sendromu medikal danışma kurulu üyesiyim.

Ömer için tıbbi anlamda neler yapabileceğimi araştırırken fonksiyonel tıp ve fitoterapi ile ilgilenmeye başladım.

Oldukça nadir görülen bir sendrom olması, henüz 2016 yılında tanımlanmış olması ve tanı yöntemlerine ulaşmakta güçlük olması nedeni ile bu sendromun tanı alma oranları oldukça düşük. Biz ikimiz de doktor olmamıza rağmen, oğlumuz anca 6,5 yaşında tanı alabildi. Türkiye'de hekimlerden oluşan sosyal medya platformlarında ZTTK sendromu ile ilgili farkındalığı arttırabilmek için paylaşımlar yapmaya çalışıyorum. Sendromun tıp dünyasında bilinirliği artarsa tanı oranlarının artacağını düşünüyorum.

Oğlumun ZTTK sendromu tanısı alması ile çıktığımız bu yolda, dünyanın diğer ülkelerinde bizimle aynı kaderi paylaşan diğer çocuklar ve aileleri ile tanışmış olmamız büyük bir lütuf oldu. Önce sosyal medya grubu, şimdi ise dernek ve web sitemiz ile yeni tanı alacak ailelerin yalnız olmadığını hissettirmek, yaşadığımız deneyimleri paylaşmak çok daha kolay olacak. ZTTK son-shine derneği Türkiye temsilcisi ve ZTTK sendromu medikal danışma kurulu üyesi olarak Türkiye'de yeni tanı alacak aileler için medikal ve sosyal anlamda elimden gelen her türlü desteği vermek benim için mutluluktur.

Mam na imię Ola i jestem mamą, która od 2017 roku szuka sposobów leczenia syna z chorobą rzadką, tzw. syndromem ZTTK. Można mnie spotkać na mamaszukazdrowia.pl.

Wierzę, że codziennie budzimy się w nowym świecie, lepszym technologicznie, co pozwala innej osobie zrobić krok, który będzie milowy w leczeniu, usprawnianiu mojego dziecka.

Nie ma rzeczy niemożliwych — trzeba tylko do nich dotrzeć!

Martha Dravitzki is a dedicated mum to her son Falcon and a passionate advocate within the special needs community. With seven years of lived experience supporting a child with ZTTK syndrome, she brings both empathy and practical knowledge to her role. Martha is an active member of community groups focused on raising kind, capable young people with diverse needs. She stays informed on the latest research, funding opportunities, and developments connected to the foundation, and regularly connects with other parents through a dedicated Facebook support group. Her experience includes navigating New Zealand's early childhood and primary school systems, with an understanding of Individualised Education Plans (IEPs), specialised learning support, and public health services. Martha is committed to sharing her knowledge and supporting other families on similar journeys, helping to build a connected and informed community.

Mi nombre es Ana, soy española y vivo en Madrid. Soy madre de dos hijas maravillosas, Carla y Sandra. Mi hija mayor, Carla, nació en noviembre de 2003 y en mayo de 2019 fue diagnosticada con síndrome ZTTK a través del Instituto de Genética Médica y Molecular del Hospital Universitario La Paz, en Madrid.

Carla es una niña alegre, cariñosa y con una enorme capacidad de superación. Aunque presenta un retraso madurativo y requiere apoyo en su día a día, siempre hemos trabajado para potenciar su autonomía. A pesar de sus dificultades, se comunica, se esfuerza y mantiene una actitud positiva que inspira a quienes la rodean. Actualmente continúa formándose en el programa Compass 360 de la Fundación A La Par, al que acude cada día con ilusión y motivación.

En cuanto a mi trayectoria, tengo formación jurídica y me especialicé en Derecho Comunitario en París, en la Universidad de La Sorbona. Sin embargo, el nacimiento de Carla y su diagnóstico marcaron un antes y un después en mi vida profesional. Ese camino me llevó a reinventarme y a orientar mi carrera hacia ámbitos que me permitieran mayor flexibilidad y presencia familiar. Hoy en día combino la gestión de patrimonio con la dirección de mi propia empresa, lo que me permite equilibrar mis responsabilidades profesionales con las necesidades de mi familia.

Tras muchos años de revisiones médicas, consultas en múltiples especialidades y un largo recorrido de aprendizaje, pongo a disposición mi experiencia personal y práctica para acompañar, orientar o apoyar a quienes lo necesiten, con la esperanza de que juntos podamos avanzar hacia un futuro más claro y lleno de posibilidades para la comunidad ZTTK. Correo: aes.zttk@gmail.com

My name is Jemma Cochrane, and I live with my family here in the UK, based in Northern Ireland. I'm a proud mum to my children, Ava, Olly, and Connie, who are at the centre of everything I do. Ava's journey is what led me into the rare disease community and to where I am today. I am the UK and Ireland ambassador for ZTTK syndrome. My role is deeply personal, as Ava lives with this condition and faces complex needs every single day. She is also a twin to her brother Olly, which is incredibly rare—only a very small number of families are known to have twins where one child is affected by ZTTK syndrome. Ava lives with epilepsy, neurological complications, and heart and kidney problems. She is PEG fed, unable to weight bear, and has undergone multiple surgeries, including a cleft palate repair and grommets. She is non-verbal and relies on full support for her daily care, including feeding, communication, and understanding the world around her. She experiences ongoing discomfort and periods of overwhelming distress. Because she cannot tell us when something is wrong, this can sometimes present as self-injurious or distressed behaviours, as she tries to cope with pain and frustration in the only way she can. Despite everything she faces, Ava continues to show incredible strength and resilience. Through my role as an ambassador, I hope to raise awareness, support other families, and help ensure that children like Ava are seen, understood, and never forgotten.

Hi, I am Trace, a Sydney-based parent and advocate for creating inclusive, meaningful lives for people living with disability.

After many years of uncertainty about the cause of our son's disability, in 2025, at the age of 20, Jerome was diagnosed with ZTTK syndrome. Receiving a diagnosis brought long-awaited clarity and, just as importantly, connection — introducing our family to a compassionate community that truly understands life with ZTTK.

As a graphic designer with experience working across charities and not-for-profit organisations, I am interested in using both my skills and lived experience to support the ZTTK SON-Shine Foundation.

I am committed to increasing awareness, supporting families as they navigate diagnosis and life beyond it, encouraging community connection, and contributing to initiatives that advance research and advocacy for ZTTK syndrome.

我的第二个孩子安安在9个多月诊断了ZTTK综合征。虽然我是一名医生，但当这件事情真实发生的时候，还是需要很多时间去消化。安安发育迟缓，喂养相对困难，睡眠一直不好，同时有隐形骶椎裂、卵圆孔未闭和室间隔缺损。虽然我们在5个月的时候就开始做康复治疗，但总是被呼吸道感染打断。诊断ZTTK综合征后我在互联网上迅速找到了ZTTK SON-SHINE FOUNDATION，也联系了中国境内更多的家庭。如果您的孩子也遗憾确诊，那就让我们在一起相互鼓励、共同前进。

路遥迢迢共同走，众志成城互助多！

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