Name: Hailey Brianne Goranflo
Sex: Female
Age: 6
Country: USA
Diagnosis: Batten Disease
After a very successful first round of treatment during late summer of 2008 Hailey returned to our facilities in March 2009 for a second round of treatment. Although her situation improved significantly compared to the first time she came to our facilities in 2008, it became clear that she still has a long way to go ahead of her.
Hailey suffers from a rare genetic disease called Batten Disease. While children who are suffering from this cruel disease seem to be rather healthy in their development, they start to show severe symptoms once the disease breaks out. Today this disease is still fatal, and unfortunately there has not been any cure developed yet.
When Hailey visited us the first time she was very weak and in severe circumstances. At a height of approx. 100 cm she only weighted 18 kg. She was unable to move any part of her body, unable to speak or to express herself. Her eyes didn't show any response to light. She experienced over 500 myoclonic seizures a day. She suffered from heavy and loud breathing due to severe congestion in her lungs and breathing ways.
Before the Treatment
When Hailey visited us the second time, her situation improved greatly. Her height was at about 112 cm and she weighed 28 kg. Her breathing and congestion was much better and the seizures she experienced decreased to 5-10 a day. Still, the light intensity of her eyes was still very poor, suggesting very poor eyesight. It was still necessary to suction mucus out of her several times a day and when lying on the bed she would drool. Her body was still generally weak, not allowing her to move or to support herself.
After the Treatment
During her 6 weeks of therapy Hailey could again experience some significant improvements. Her body and her muscles became stronger allowing her to do some minor movements. For example, she is now able to turn her body over by herself up to 50 degrees during physiotherapy. She is now able to lift her arms a little and grasp things with her fists. Most importantly to mention though, is that she is able to express herself. She can now make noises when she is uncomfortable and expresses herself when she is happy. Her face shows an expression of childish pain when she receives an IV or injection and she even tries to talk to her mother now. It should also be noted that her eyes are now far more responsive to light, suggesting that her eyesight has improved as well. She is only drooling very seldom now, and the need for suction of mucus has been decreased very significantly.
Unfortunately Hailey experienced a severe lung infection at around 4 weeks into her treatment. Although this was controlled by our medical team, this infection had a bad influence on the treatment. Still, overall the treatment was a great success, and we look forward to Hailey visiting us again this summer for a third round of treatment. Our medical team's prognosis is that the third round of treatment will yield the most improvements to her condition yet.
If you are interested in Hailey's situation or would like to express your support to her and her family, please visit her blog at:
http://haileyandcarter.wordpress.com/
To watch recent news from WLKY, a local media news station, about Hailey, please visit:
http://www.wlky.com/health/19150852/detail.html
Hailey's mother email to the doctor:
"2009-4-9
The good news is Hailey is doing so much better! I know when I got home, I felt really bad too and maybe that's how she dealt with it... more seizures. I increased her Flunarizine and her Clonazepam. I think that now that she is adjusted to being back home and with the medicine changes, she is doing much better. The only thing I am worried about is not giving her the Flunarizine on the holidays (we say weekends). I'm worried that she will have more seizures on Saturdays and Sundays because of that. Unless you advise otherwise, I will continue to do as ordered."
"2009-4-24
Hailey's lungs and breath have been very good."
"2009-5-2
She is no longer having the bad seizures, they are under control."
"2009-5-23
Hailey is doing good and her condition is stable."
"2009-8-30
Hailey is doing pretty good and has remained stable since our last trip. She isn't having very many seizures a day and is not progressing into the disease as quickly as before. Thank you all so much for what you have done for her. She is still very sick of course and we may make another trip to China early next year. I think I would like for her to have at least one more round of stem cell treatment. Neil and I are still talking about it though. I will definitely let you know what we figure out. "
"2009-8-30
The good news is that Hailey is doing well and has remained stable since our last trip to China, earlier this year. Sadly, she has not made any more improvements, but she also isn't progressing into the disease as quickly as before. Before receiving the first stem cell treatment last year, it seemed like she was getting worse and worse by the day. The doctors here were preparing us for the worse and we didn't know how much time we had left with her. We thank God everyday for what the doctors in China did for her. They literally saved her life and improved the quality of her life so much.
We do know that she still recognizes our voices and understands some. Her little eyes light up and her facial expression changes when we talk or read to her and when her favorite tv shows come on. She tries to communicate with us, with what I can best describe as faint baby talk, and we can tell that she is happy. She is doing very good with all of her physical, occupational and massage therapy, which I'm sure she has to enjoy. She has still been gaining quite a bit of weight since the treatments and is now nearly 70 pounds! I can't believe that she'll be 7 in October!
We are afraid though, that this may be the last summer where he is able to do those fun things that he enjoys so much. "
"2009-9-7
Hailey has been doing really good lately, although she has had a cold the last two days. She had an EEG and an MRI Monday and I will let you all know the results as soon as we get them back."
