Posted On: October 29, 2017
Parys is a young, vibrant 13-year-old girl who has been battling allergy, infections, pneumonia, eczema, chronic cough, ear infections, constant congestion along with wart, molluscum and many other infections. Until about 3 years ago I have been going to every kind of Doctor and specialist trying to figure out what was going on with our beautiful daughter. Then after what we thought was a bite or something on her toe had grown into what looked like a wart gone very wrong the dermatologist biopsied it and sent it back to The National Institute of Health in Maryland where it was found she had a very rare (so new they are still compiling Data on the disease called Dock8 deficiency) which means she is missing a genetic component that weakens her immune system so much. Her white blood cell count is so low she is constantly sick to the point that now our beautiful daughter has been given no choice but to go through a Bone Marrow Transplant and Chemotherapy. Now no child should even have to think about such things, but she has had to ask the Doctors the questions of "Will I die? Can I have kids? Will my hair fall out? Will I be normal again if I do this? What will happen if I don't do this?" Many more questions but the answer to her on some of these is Yes you could die, yes you will lose your hair, no you may not be able to ever be fertile , you can and will become more sick and if you do not have this you are at bigger risk of lung damage, liver damage, cancer, multiple warts covering your body, more infections and not living past your mid-twenties. How do you make the decision to travel across country and leave half your family to go back east from the west coast? NIH is the leader and foremost authority on Dock8 deficiency and it is where Parys has the best chance for success. We have been battling the timing and now she is getting increasing infections, and lesions. As they continue to increase her chances of successfully beating this decrease. We are hoping to raise funds for her journey to recovery, possibly for her twin brother to come and see her and help us through the 4-month hospital stay back east as she recovers. She is set to start her journey in mid-January and we would love any help with flights for family and medical uncertainty. The expense of flights, 4 months of missed work, medicines and recovery are going to be a struggle for us to meet so we are reaching out for help in the form of money or even flight points to be used for multiple trips across country on her journey to a normal life.