Mustasaari, Finland -
Full trisomy 13
 Hi!
We had a 6 months birthday party for Tindra for a couple of weeks ago.
Tindra is amazing! She likes to sit and stand and turns around on the floor.
She can eat normally and got rid of her nose/stomach line for about 3 months
ago. We practiced to eat for about 8 hours/day and after about 3 weeks she
started to eat whole meals without the line :-) We are so proud of her. The
doctor could not believe it at first!
Tindra is almost 60 cm long and weights over 5 kg!
In the beginning of December we went to Sweden to visit "big" Tindra who
also has Trisomy13. That was fun. They are a loving little family and they
have helped us very much!
We have also found out that Tindra does not have fully trisomy13 which they
thought in the beginning. Tindra has instead an unbalanced translocation
between 9 and 13 chromosome.
This friday Tindra will start to get communication help from a place called
Kårkulla!Malin and family
malin.soderman@jippii.fi
 8-2-07
Our Tindra was born 6 weeks to early in June 2007. She was 41,5 cm long and
her weight was 1860 g. She was doing fine and did not need any help
to breath. When Tindra was 3 days old she was transferred to a hospital in
Tampere (Finland). There was a heart specialist that made an echo of her
heart.
The doctor started to believe that she had trisomy 13. They did a test and 2
days later it was confirmed. Tindra had full trisomy 13.
The doctors in Tampere talked about that she would only live for a couple of
days and if she would make it, her life would be full of suffering and pain.
Tindra was transferred back to the hospital in Vaasa. And she is now over 5
weeks old and is doing fine. She has moved home a couple of days ago and the
doctors are visiting her 2 times/week.
All doctors and nurses in Vaasa has been great! They do not talk about how
long time she has left since they do not know.
Malin and family
malin.soderman@jippii.fi |
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Translation