Honormembers - Kids of the sun

Here you can meet some of our still living kids and learn more about their story.


Isabel Fernández Domínguez


Isabel was born in Buenos Aires in February of 2009.

She is now 4 and a half years old.

Isabel suffers from Tay-Sachs disease, juvenile form.

She lives with her parents Beatriz and Martin in Madrid.


Until the age of two Isabel was a healthy little girl. She had the life that any other child could have: school, little friends at park, holidays and trips to Spain to visit her family. And always a big smile on her face.

Around the time of her second birthday we started to watch weird things: she began to twist her right foot while walking, started falling, her development of language slowed down… This was the beginning of more than one year of diagnostic odyssey. While her deterioration was evident, many doctors were involved searching for an answer that seems would never arrive. She started to receive some therapies to help her to recover her lost skills.On 6^th of august of 2012, the answered came unexpectedly from one of her many pending results, in a rainy afternoon. A disease discarded in the past, presented in an uncommon mutation, a strange and unknown word, was the answer: TAY-SACHS.
Since then this is our life: help Isabel to have the best possible life, be with her through all the terrific changes this disease brings, cope with all this, as parents, as family, as human beings. Love her in a fiercely way because we understand that today she is with us. And also understand that there is another world apart from our comfortable past lives, in which many people suffer from rare diseases. A world that needs from people like us, family, friends, to be put under the spotlight of the society to raise awareness.  People, medical researchers, doctors and health care givers, Governments, politics parties…. All the society must know that we can avoid more ill children if we work together for it.Since then, as a mother, this is my fight. Isabel is being followed by a marvelous team of specialist in England. At the end of our first visit, the leader of this team looked at my eyes and said this to me: “I don’t believe in God, but I believe in miracles. We will do our best to look for a miracle for Isabel”.

That is my hope. A miracle for Isabel and for all the children that suffers from Tay-Sachs, or other rare diseases.  And her endless smile is the inspiration that encourages me to continue with this struggle every day.

Visit Mama Beatriz's Blog about Isabels Life: talvezisabel.blogspot.com


Gustavo Santos Silva


This year he celebrated his 7th Birthday! 

When he was 4 years old, he received the terrible diagnosis:

Juvenile Tay-Sachs syndrome.

(Life expectancy is about 6 - 15 years)

He lives with his family in São Paulo, Brazil.

 

His mother Rute was very afraid that he would not live to see his seventh birthday, but Gustavo is fighting bravely and did not left them!

This is what his mother Rute wants to share with you:

Live intensely.

Every second of each day, at any time.

Alexa "Lexi" Gordon

Was born on March 30, 2011.

She is now 29 months old.

Lexi suffers from Tay-Sachs syndrome.

She lives with her parents Tracy and Brian in Virginia, USA.

Lexi's story:

When Lexi was 12 months old, she was diagnosed with autism because her development was lagging behind. At 14 months she had a 15 minute seizure and was flown to the Children's Hospital in DC.


This has changed our lives forever. After an MRI and many blood tests, finally she got the correct diagnosis, Tay-Sachs. There is no cure for this disease. The symptoms that the disease brings with it are paralysis, deafness, blindness and death. One day you have to put a feeding tube in and that will be the beginning of the end. It has a lifespan of only 3 to 5 years. She is now 21 months old.

Please pray, lights candles, our little girl that God gives a miracle. Thank you and God bless! The Gordon Family

Brook Hubbard

was born on 24 Born November 2010,

And is now 35 months old.

She suffers from Tay-Sachs syndrome.

Brook lives with her mother Kate and her brother Jake in New Hampshire, USA.

 

This is what Brooks Mum Kate wants to share with you:

The July 23, 2012, I will never forget. The day we got the devastating diagnosis. My baby Brook is suffering from Tay-Sachs syndrome and has to live only a few years. The year before we thought that she would suffer from Rett syndrome, but after an appointment at the eye doctor, where they discovered the cherry red spot on Brooks retina , it was clear that the diagnosis was wrong. Brook is loved by so many people here, her brother Jake adores her!

We enjoy every second with each other and pray every day for a further day as three.

Brielle Emma Walters

Brielle was born on October 17, 2009.

She is now 4 years old.

Brielle suffers from Tay -Sachs syndrome. Infantlie form.

She lives with her parents Ashley and Brian in Beloit , Wisconsin. United States.

 

When Brielle was 14 and a half months old, they got the diagnosis of  infantile Tay -Sachs disease , after 5 months with blood tests and examinations. For parents, a world collapsed :

We could not believe it. This is not fair ! Only 10-15 children are diagnosed each year , why God chose Brielle ? Why our baby ? Our heart felt as if it broke into a thousand pieces .

Every hope and every dream of a future for Brielle , were destroyed.

Brielles parents Ashley and Brian started an organization to care for their financing , and to support the research .

Since the life of children suffering from Tay -Sachs is very limited ( average life is 3 years ) decided Brielles mom Ashley to make a photo of Brielle every day . Die images can be viewed on their website and on Facebook.

http://www.battleforbrielle.org/

Ruby Backus

Ruby and her twin brother Sam are IVF babies , and were born on June 22, 2010.

They live in Kidderminster , United Kingdom.

Ruby suffers from Sandhoff disease , her brother Sam is completely healthy .

 

Her mom Nikki would like to share with you this:

The happiest day of my life was when I found out that I am expecting twins. I loved Ruby and her brother for a long time , long before they were born. And then they came to the world and the love that I felt was immense. As Sandhoff disease was diagnosed at Ruby , I could not believe it even though I wanted and love her so much, she will be taken from me. It is heartbreaking to see her everyday struggling with things - eat, move , see, breathe. It is still heartbreaking to see how her brother grow and develop , and to know that she should be equal.

 

I wonder how she would be if she would not fight such a devastating disease .

I have to smile at the same time and fight back the tears when Ruby's b

Where has your smile gone
sweet child of mine
i fear i took it for granted when i saw it all the time

your laughter, your expressions,
your bright eyes too
have been taken far away locked somewhere deep inside of you

the problem sounds so simple
it must be easy to fix
but the medicine isn't there yet
i have to watch as you get sick

but we'll fight me and you
and the rest of your family too
we wont stop up until you smile again
we'll never give up and neither must you

By Nikki Backus –for Ruby

Haylie Irran

was born on May 13, 2010.

She lives with her parents Eva and Zivan in Mondsee .

Haylie suffers from Tay -Sachs disease (infantile Form/Typ1).

She is now 3 years and 5 months old.

 

What Haylies mom would like to share with you :

To care for a child with such a devastating disease is not always easy and requires much energy . But to be able to have Haylie with us is the most beautiful gift in the world, and we are grateful for each day with her. She has taught us to be open, shows us every day how strong she is and how much power she has. She is fighting so bravely against this disease and shows us so many times that she wants to live. Through her we have learned to have hope. Hope for recovery. Hope for a cure.

Even if the medicine teaches us something else.

Haylies road is not at its end.

I pray every night for a miracle, and eventually had to recognize that I have already obtained this miracle.

Haylie is my miracle.