Sacha - Latest News - May 2009
Sacha's - latest news. This page keeps you up-to-date with latest news and happenings in Sacha's battle against Batten Disease.
Dear All,
Once again, I sincerely apologise for taking so long to keep you up-to-date with Sacha's progress. As you can imagine, we have a very busy household especially with a soon-to-be one year old!
It's been 18 months now since Sacha returned from her third and last trip to China for what was her last stem cell treatment. During this period we have seen, what is for us, the greatest period of deterioration in Sacha. I think that when we were first investigating going down the stem cell route there was such incredible hope that kept us afloat. During the treatments we saw some unbelievable improvements in Sacha - especially after the first one. We were under no illusion that there was still no cure however. Now that Sacha is 8 1/2 she has advanced to a stage in this illness where we don't believe that further stem cell treatment would be advantageous to her so we are keeping her as comfortable and as happy as we can.
I'll tell you how she is now. Sacha has lost nearly all of her vocal skills and makes few noises now. It is almost impossible to tell if she is happy or sad so we have to make sure that we're doing everything to keep her happy. Her arms and legs still flail about sometimes and we're not sure if this is voluntary or a symptom of her condition. We no longer feed her orally as it became harder and harder to ensure she was having a sufficient intake of food to nourish her properly. She takes all her nourishment via gastrostomy and when she does feed orally, it is for pleasure. Her school have some degree of success with this - especially if there's chocolate involved!
In January this year, we noticed that Sacha seemed to be having some respiratory issues - nothing serious but not quite right nonetheless. Today, our community nurse demonstrated the use of a suction machine which we have ready if we feel it necessary. Sacha has been coughing quite violently recently and finds it hards to bring up the phlegm lying on her chest so at least we can now give her a helping hand.
Sacha's seizures are still largely under control and she has maintained this since our China trips. She has had a few episodes of tonic-clonic seizures but nothing like how things were before she was diagnosed. Who would want to go back to that living hell? Not us! We don't know whether her medication is more responsible for this or the stem cell treatment. Also, Sacha is experiencing early onset of puberty so has grown much taller and has filled out considerably! Apparently this is not uncommon in children with Batten Disease..
Due to having 2 children in buggys, it has sometimes been impossible for me to leave the house as I can't push them both at the same time! We are looking for and accepting more and more offers of help from our community teams and hospices which has made life much easier for us all. Overall though, I would say that Sacha is very stable right now which means that my nerves are not constantly fraught. Thank you to everyone who has made contact with us for support or questions or just to see how Sacha is. As usual, we'll keep you posted.
Annette, May 2009
So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!