Welcome
Baby
“YOU ARE NOT ALONE”
The Purpose of the Welcome Baby Project:
Is to explain what is Down syndrome to the families with the children with Down syndrome and to show that they are not alone in the process of accepting the situation, to give guidance on every subject and prepare them for the future unknown to them.
CONTACT: +90 507 018 00 66
What is the Welcome Baby Project ? (1)
Background
The Welcome Baby Project constitutes the main purpose of the foundation of the National Down Syndrome Association (UDSD). The purpose may be summarized as; being with the new born baby with the Down syndrome and the parents, make them feel that they are not alone when they are stepping a brand new and a quite different life, and let them take the right steps on Down syndrome by sharing the experiences.
The Project was set out upon the President of National Down Syndrome Association Sami Altunel could not find anyone to consult to or to refer to in his near circle or in the health institutions after his son Efe Altunel with Down syndrome was born. Sami Altunel has set out the project by saying “There was noone around me, but I will try to be beside at least some of the people during their difficult times” and he has started this Project as a one person’s volunteering project.
He laid the foundation of the project by explaining what is Down syndrome, what has to be done, what kind of health, psychological and social life problems may be encountered, to the families he was able to reach and who were expectant with a baby or who had already had babies with Down syndrome and by being beside them.
He and his four other friends all of whom have kids with Down syndrome founded the National Down Syndrome Association in February 2013 and have been continuing visiting our kids with Down syndrome and their friends at home, and at hospitals, working on raising the awareness and consciousness, and giving briefings.
The Welcome Baby Project Carried Out by the Donation Subsidy of Sabancı Foundation (2)
The project that is aimed at giving moral support and informing/raising consciousness has been offered to the Social Development Donation Programme (TGHP) that is granted by Sabancı Foundation every year, so as to take the project to larger masses and to bring the project ample opportunities, and the project was became under the projects set to be supported by the foundation on 2nd of July, 2014. Thus, the project has been instutionally frameworked and has been evolved into a social solidarity and awareness project that has the opportunity to offer both financial and moral support simultaneously to the families with the children with Down syndrome.
What does the Project Aims At?
1. Within the scope of the project, informing the families with the kids with Down syndrome about the Down syndrome fact and taking the precautions that may help them recover the emotional traumas easily in the hospitals when possible.
2. Visiting the individuals with Down syndrome at their homes and informing/raising consciousness, following them according to the health control lists or according to their individual health problems, and carry activities for their inclusion into the social life and activities.
3. Giving education to our children who could not have sufficient pyschological or physiotherapical support by the volunteering trainers.
4. Bringing the families with the children with Down syndrome together via family reunions, let them share their experiences, evolving these get togethers into an educational envirnoment, and transforming our children into the active participators of social life/activities.
5. Briefing the health community on Down syndrome by conferences and bringing the families with children with Down syndrome and the health personnel together. Visiting family practice centers and share our experience with the individuals with Down syndrome.
6. Giving briefs on the rights of disabled, together with the project associate institutions.
7. Taking all of the familes with the children with Down syndrome outside their homes and help them participate the life and bringing them together in accordance with this purpose.
Who are the Project Associate Institution/Institutions? (3)
1. National Down Syndrome Association
2. Local Health Authority/Izmir
3. Local Public Health Authority/Izmir
How is the Project Implemented? What Else will be Done?
1. Within the scope of the project, our babies with Down syndrome (between the age 0-1) will be identified as soon as possible and will be visited preferably in the hospitals or in their homes by the project associates and by the volunteers. (In the event that the family rejects the visit, contact information is left to the families and the families are visited upon their demand)
2. The visits will be carried out with a doctor, a psychologist accompanied by a family who has a child/children with Down syndrome. During the visit, the families with the baby (0-1), or the older individual with Down sydrome if a need determined, will be delivered the below listed items. They willl be informed about Down syndrome and extensive information will be shared on what has to be done and what situtations might be encountered.
The Items to be Delivered to the Age Group (0-1) or Older If a Need Determined
*Baby Gift Set
*Early Steps Early Education Set
*Educational/Tutorial Game Sets
*Down Syndrome Information Manual
*Welcome Baby Information Leaflet
3. Within the scope of the project, our children with Down syndrome above the age group 0-1 and their parents will be visited by the more experienced families after getting an appointment. During the visit, the famillies will be presented a Down syndrome manual where they would be able to find answers to all their questions. Briefings and raising consciousness activities will be held.
4. If the families are willing and ask the project staff, the childrens’ health records will be collected, their health control lists will be followed according to the timing, their information on after examination records (AER) will be registered into the software that was written within the project, and health follow-up text will be sent to the families by SMS and e-mails.
In the future, if the past health records are asked, these information will be able to be presented as health reports. For this purpose, the families are asked to inform the project office/project staff to register their health records. The records are not shared with the third parties.
5. A briefing meeting will be held every month. During these meetings, expert personnel will take place and give education on psychology, phyisioteraphy, social life etc. . The venue and the time of the meetings will be announced in these adresses:
www.facebook.com/groups/288939304568996/
Families may also contact 0507 018 00 66 and have information.
6. Starting from 1st of August, 2014, provided that families get an appointment priorly, every Thursday, between 09:00-16:00, our children who are devoid of pysiotherapy opportunities will be given pysiotherapy services for free.
For appointment please call: 0507 018 00 66
How can I Apply to the Project? (4)
You only need to send a text message to info@ulusaldown.com and/or to the facebook adress pointed in the 5th article, or call 0507 018 00 66 to participate the project and to benefit from the advantages of the project.
How Much Do I Need to Spend for the Services Within the Project?
Since all of the services and materials within the scope of the project are covered by the Sabancı Foundation and all the personnel are comprised of volunteers, you will not have to pay for anything.
How Can I Support the Project?
The project is carried out to bring solidarity between the families with Down syndrome and raise awareness in the society. You may take your part as a volunteer. You may also inform the individuals with Down syndrome and their families about the project and let them benefit the advantages of the project.
What is Down Syndrome?
Down syndrome, is a genetic condition in which an extra chromosome (1) involves. Down syndrome is neither a sickness nor inherited. It occurs randomly during the pregnancy.
Everybody with Down syndrome has different levels of learning difficulties. Some of the physical features are common and they may be inclined to have some of the medical problems. But it should be never forgotten that the individuals with the Down syndrome has different characters. Who they are is determined by their strong aspects, weak aspects and their personal behaviours.
Friends Do Not Count Chromosomes
National Down Syndrome Association has been founded for the purpose of ensuring the individuals have the equal rights in all aspects of life, raising the consciousness of the society and applying the projects aimed at chaging the disability perception of the society.
For Your Benovelence Donations; (5)
The Name of the Account: Ulusal Down Sendromu Dernegi
The Bank: Yapı ve Kredi Bankası A.Ş.
İzmir Private Bank Central Branch Code: 896
Account No: 94789444
Iban No: TR6600067010000000947894444
Many projects will be realized for the individuals with Down syndrome and their dreams will come true thanks to you.
Our Rewards
*The Most Volunteering of the World (Stover Award USA)
*The Most Volunteering of Europe (Stover Award Switzerland)
*The One That Makes The Difference of Turkey (Sabancı Foudatio, Turkey)
Yukarıdaki sağdaki resme tıklayın ve yazıcıdan çıkış alıp, çevrenizdekilere imzalatın, her sayfayı ayrı ayrı fotoğraflayın, sonra samialtunel@hotmail.com veya 02322266068 e fakslayın
KISA AÇIKLAMA
Yeni engelli bir bebeği olan tüm aileler, önceleri bir şok, inanamama, ne yapacağını bilememe, çocuğun kendi çocukları olamayacağı gibi düşünceler, daha sonra ise ‘neden ben’ ile başlayan birçok benzeri düşünceler ve ruhu kaplayan isyan duyguları veya çocuğun engelinin reddine kadar duygular hissedebiliyor. İçine girdikleri şok dönemi kişilerin kendi yapısı, aile içindeki durumu ve yakın akrabalarının etkileri, alınabilecek psikolojik destek doğrultusunda kısa veya uzun sürebilir.
Çocuğu ve çocuğun engelini tanımak, ortaya çıkan sorunlara çözüm üretmek ancak bilinçli çabalarla olacağından, ailelere bir an önce şoku atlatmalarının, çocuğun ve kendilerinin yaşamını kolaylaştıracağını vurguluyoruz.
Asıl amacımız olan, ulaşabildiğimiz ailelere yalnız olmadıklarını vurgulayabildiğimizi düşünüyor ve bu çalışmanın Devlet tarafından yapılması gerektiğini düşünüyoruz.
(Faydalanacak gruplar Down Sendromlu, Görme Engelli, Ortopedik, Duyma Engelli, CP li, Zihinsel Engelli, Doğum sonrası engelliliği anlaşılanlar … )
Dünyada 6 milyonun üzerinde Down Sendrom’lu insan yaşıyor. Türkiye’de bu rakamın 100 bin olduğu tahmin edilirken, ülkemizde yıda ortalama 1500 Down Sendrom’lu çocuk dünyaya geliyor.
Bilindiği üzere ücretsiz rehabilitasyondan ve engellilere tanınan diğer bazı haklardan yararlanabilmek için Down sendromlu çocuklara önce hastanelerden engel durumunu belirten kurul raporu verilmesi gerekiyor. Bu kurul raporu olmadan Rehberlik Araştırma merkezlerine başvurup ücretsiz rehabilitasyon hakkından yararlanamıyorlar.
Down Sendromlu çocuklarda farklı derecelerde olmak üzere kas zayıflığı ( hipotoni) ve eklem gevşekliği olduğu için doğar doğmaz en geç bir ay içerisinde fiziktedavi desteği almaları çok önemli . Bu çocukların motor gelişimleri belirtilen sebeplerden dolayı yavaş olduğundan baş tutmaları 5 aya kadar yürümeleri 3 yaşa kadar uzayabilmektedir. Erken ve sürekli fizik tedavi ile bu süreler kısalmakta ve ileri dönemde yaşanan postür bozuklukları , yürüyüş bozuklukları gibi sorunları ortadan kaldırmaktadır. Ayrıca Bireysel eğitime de en kısa sürede ( maksimum 6 aylıkken) başlanması tüm dünya otoriteleri tarafından gerekli görülmektedir. Bu yaşlarda başlanan ve tüm yaşam boyunca devam eden eğitimler Down sendromlu bireylerin yaşam kalitesini belirgin şekilde arttırmaktadır.
Maalesef tüm Türkiye’de 0-1 yaş grubu bebeklere hastaneler tarafından rapor verilmemektedir.(Yasal olarak bir sınırlama olmamasına rağmen) Doktorların insiyatifi ile ailelere 3 yaşından önce eğitime gerek yok diyerek hatalı yönlendirmeler yapıldığı, ailelerin, özellikle maddi sıkıntısı olan ailelerin, bu haktan mahrum edilerek çocukların yaşam kalitesinde kayıplara ve kaybedilen zamanın telafisi için ekstra çaba, para ve zaman harcamaya sebep verildiği derneğimize sıkça yapılan şikayetler arasında yer almaktadır.
Down Sendromu vücuttaki 21. kromozomun 3 adet olmasından dolayı kaynaklanan genetik bir anomalidir ve kan testi ile kesin olarak teşhis edilebilmekte; çocuğun Down sendromlu olup olmadığı doğar doğmaz hiçbir şüpheye yer vermeden kanıtlanabilmektedir. Ve down sendromlu bir çocuğun hem motor , hem zihinsel olarak yaşıtlarından daha yavaş gelişeceği tüm litaratürlerde, bilimsel çalışmalarda ve günlük yaşantıda kesin olarak görülmektedir. Tedavi edilemeyen, bugünden yarına değişmeyecek ve teşhisinin %100 kesin olarak yapılabildiği genetik bir anomali için gerekli raporun daha bebek hastaneden taburcu bile edilmeden verilebileceğine inanıyoruz. (SAĞLIK BAKANLIĞININ BU KONUDA ÇALIŞMA YAPTIĞINI BİLİYOR VE BİRAN ÖNCE HAYATA GEÇMESİNİ TALEP EDİYORUZ)
Bu sebeple konunun tekrar gözden geçirilerek Down sendromlu bebeklere 0 yaş itibari ile verilmesi gerektiğini düşünüyoruz.
Down Sendromu hastalık değil genetik bir farklılıktır ve tedavisi yoktur. Verilen raporların çoğu 2 yıl geçerli olarak verilmekte, DS li bireyler her 2 yılda bir yaklaşık 2 ay süren süreçten geçerek rapor alabilmektedir. Bu yüzeden verilen raporların sürekli olması gerektiğine inanıyoruz.