Suspicious Pearson Syndrome

Hi Cynthia, My name is Ellen. I live in New York. My son was diagnosed with Pearsons Syndrome when he was one. He turned 8 in October. I have connected with parents of children with Pearsons all over the world. It would be my pleasure to talk to you. I will check back later today. Take care, Ellen

Hi Ellen,

The first few months after the diagnosis was extremely hard for us and even though I wanted contact with other families I found this difficult. Now it's a different story I have all my emotions in control and can concentrate on the near future rather than look to far ahead and guess what may or may not happen to Shay. I feel Shay is not so badly affected as some children and my heart breaks with every story I read. Only a couple of months ago I was talking to a Mum and her lovely daughter passed away just recently from Pearsons, I have learn't not to give into each negative anymore but to look upon each day as a blessing. Your Eli will certainly give hope to other families Ellen and all we can really do is to support eachother and remain strong for our children.

Sharonx

Hi sorry to hear your devasting news of Mitochondrial disease. Sometimes words are not enough to express how you feel when those results come back. Even when you are expecting it there is always that hope somewhere that maybe they are wrong. The only way I can explain how I felt was it is like greiving for someone you still have. How long do you have to wait for the Pearsons result to come back? Shay is having a test done on Monday but to save him having a muscle biopsy they only need a first morning urine sample. Apparantly it is a new way to find out the same things but without the child experiencing the pain of a biopsy. Your all in my thoughts and prayers.

Sharon

Hello Kylie,

Zach is still in the hospital and had better days than the past few ones.  He is ill right now.  I am so wishing to return home with him but also so worried about organizing our lives based on a 2 year old attached to a machine 24 hrs a day.  I am trying to wonder how to have a normal play at the parc day with him like we used to have.

How old is Aidan and what syndrom does he have?  By the way, if you wan't to keep track of Zach's issues he as his own facebook page.  It's french and english and you can search Pensées pour le petit Zachary in the group research.

Thanks

Cynthia

Hello Kylie,

Zach is still in the hospital and had better days than the past few ones.  He is ill right now.  I am so wishing to return home with him but also so worried about organizing our lives based on a 2 year old attached to a machine 24 hrs a day.  I am trying to wonder how to have a normal play at the parc day with him like we used to have.

How old is Aidan and what syndrom does he have?  By the way, if you wan't to keep track of Zach's issues he as his own facebook page.  It's french and english and you can search Pensées pour le petit Zachary in the group research.

Thanks

Cynthia

Hello

My son's health issues are getting worse and I need to find told or untold scientific studies on Pearson syndrom.  Anabody aware of any little track for me?

He needs an kidney transplant or soon this will be the cause of death.  His liver is now attack and also his nerves and muscular functions.

Thanks deaperate mom.

Cynthia

Hello Cynthia my name is jim lawhead my lil niece has ben diagnosed with Pearsons syndrome she ( taylor ) is 9 months old my Nephew ( justin) & his wife ( danielle) are first time parents so this is alot dropped on them and of course they are scared i am trying to get in contact with people for them to to talk to or even some type of support group any type of help would be great my E-Mail address is j.lawhead@live.com i don't have their e-mail address as of yet or you can call me @ 916-289-8311 and i can give you their phone number thank you very much ..and god bless ..