Do We Really Have It So Bad!
So this little precious angel on the left is my wonderful niece her name is Katerina! She lives in Massachusetts with her two brothers Steven and Baby Aires (named after my dad)!
Katerina is very very sick she has an illness called Pearson’s Syndrome it is a very rare disorder that only 100 children in the world have. Most Children don’t make it past 10 years of age. You can read more about it by Clicking Here!
Katerina, my sister, and her family have been living with this for 4 years now, and it is a very difficult disease to deal with; Liver failure, diabetes, blood transfusions, fevers, no growth or weight gain, nose bleeds, the list goes on. I admire my sister’s strength and Katerina’s strength too, she is a brave little girl that has endured so much suffering and so much pain. Yet she is so smart and is such a happy little girl it’s incredible to see, and she brings such joy to anyone’s heart.
So I have been in Boston since Wednesday May 26th to help my sister, Katerina, and her family out! I spent Thursday in the hospital with Jo Ann (my sister) and Katerina. Katerina needed a blood transfusion, this allowed me to see first hand what this poor child goes through every 2-3 weeks, and it is absolutely MISERABLE! And yet she was so polite to all the nurses and staff, saying hi and telling them she loved them…truly amazing to see!
We went to Children’s Hospital in Boston, MA so I also saw first hand all the suffering other children are going through. I can’t tell you how heart moving it was. I tried real hard to fight back the tears it was definitely a defining moment for me. At that moment I also realized how lucky I was to have the health I have as we all should. “A man’s wealth is measured by a man’s health!” Ironically this was the quote in a fortune cookie Katerina opened yesterday after we ate chinese food! And it so true and something most of us take for granted. Give thanks for your good health and appreciate it if you have it.
NOW THE GOOD NEWS and the reason I am writing to you about this is, that Baby Aires who is 6 months is a GIFT From GOD. When Baby Aires was born my sister had his umbilical cord saved so she could have it tested for stem cell match. Well months later the results have come back 100% Positive! Truly a miracle. This is so rare for this to happen and we are so thankful, because this means Katerina has a chance for a normal life.
There has been a case of another child with Pearson’s Syndrome having a successful stem cell transplant in Belgium. So after much contemplation and research my sister has decided to go ahead, and try this transplant on Katerina, however there are great risks involved. The greatest of them comes with preparation for the transplant, she has to go through chemotherapy to kill the present cells in her body to make room for the new ones.
Now since she is already very weak there is tremendous risk with this procedure there could be neurological damage, and not to mention death. She will be in a quarantined sterilized room for 100 days with my sister, shut out from the rest of the world. So as you can see this will not be an easy feat. There is still great sacrifice before the great reward…as with anything worth having in this life!
So I am asking you for your prayers during this time. Prayers to give her, my sister, Baby Aires, Steven, and Peter (my brother in law) strength to endure the journey they are about to embark on, and Prayers for a successful transplant, and a happy healthy life for Katerina.
I have come up to Boston to be with Katerina, my sister, Baby Aires, and to help distract Katerina’s brother Steven from the things going on. We have gone to the movies, the beach to fly a kite, bowling, going for rides, and racing radio control cars. Everything a 6 year old boy loves to do, but hasn’t been able to do, because he is worrying about his sister all the time. He hasn’t had time for distractions, because he is wrapped up in everything happening, so I have done my best to keep him distracted for the short time I am here.
My mom is here too we flew up together, and my aunt flew in from Portugal to offer any support and help that Katerina and my sister need. She has been here for months sacrificing so much that it makes me admire her even more than I ever have. It is so great to see my small family pull together, and help as much as we can, hoping and praying for the miracle this little girl deserves.
Thank You for letting me share this story with you and your prayers and comments below are appreciated.
Gratefully,
Anthony Aires
