Melissa & Gregory

 
Melissa with Gregory, Tylor, Zachary, Chelsy & McKenzie

Name: Melissa and Greg Gray

Birthday: July 7, 1966 and December 26, 1965

Location: Lock Haven, PA, USA

Family members with EB: Daughter Mckenzie.

EB Type: Recessive Dystrophic.

Biography... in their own words:

Everyone has heard the phase of new beginnings; well this is a story true new beginning. Both Missy and I have children to previous marriages. You have maybe heard of yours, mine, and ours. Well we had been missing the (our) part of the family.
We worked on conceiving naturally, In-vitro Fertilization, and the whole process of Missy taking shots. This was a very emotional time for us, we finally had some positive results, and found out we were finally pregnant.
We had thought things had been going in the right direction but we had gone for a normal check up during the pregnancy at 5 ½ months, we received devastating news, the baby had no heartbeat.
Therefore, we were back to square one again. We had discussed our options at this point, as to what we could do to fill this void in our life. We decided that we could help give a child a new beginning and give ourselves a new beginning by adoption.

This truly was the start of a new beginning and firsts. The first time either one had even thought about adoption, this was very scary just due to the fact that we didn't even know where to begin, what the costs would be, if we could even afford it.
We made an appointment with a local adoption agency searching for answers and we found them, not all of them but enough to know that this is truly what we wanted to do.

We will never forget the day that we received a phone call and was told we have a baby girl one day old if we chose to take her, we had also been told that she had some skin problems.
We packed our bags and off we went to the hospital about four hours away from our home to find this precious miracle of life.

There is no way on earth could have we walked away from this beautiful girl, I will never forget my 1st words were that she has a home and it is with us no matter what skin problem she has.

The most wonderful gift that the good lord has given us is this beautiful little girl. Her name is McKenzie. She has been diagnosed with recessive dystrophic EB. She spent the 1st fourteen days of her life in the pediatric intensive care unit due to the trauma from her birth.
She was born with no skin on her right leg from the knee to her little toes and her little fingers had been blistered along with several blisters on her face and various parts of her body.
This was another one of those firsts; we never heard of the skin disorder nor did either one of us have any medical background to give her the attention medically. We did know one thing; that is, she would never lack TLC.
McKenzie was 1 year old on March 2nd, 2002, she still has her right leg wrapped since birth and we change her dressings daily.
She will still get blisters almost daily, but we stay right after them popping even the smallest of them to keep from filling up and getting bigger.
She is a real trooper, she will sit there and watch you take care of her sores with little to no resistance. She is doing very good, and is getting to the point of knowing what some of her restrictions are and she will avoid actions that she feels unsafe or she may get hurt. We are helping her through the toddler stages with crawling and the beginning stages of walking with kneepads; they have been a blessing.

McKenzie is enrolled in a day care center at a local church. We have worked with the employees at the center on what to look for, how to care for her. They have been so wonderful to her. McKenzie will play on the mat and crawling around interacting with the other kids. McKenzie just loves it there with her new friends and especially Miss Marsha.
McKenzie sees a dermatologist regularly and her Dr. is very amazed with her progress, she is in the 90 to 95 percentile for her age group. We have learned through all of this that there is no magical treatment or care it has been trial and error and again lots of TLC. We have found that in the summer months that any new or open wounds that are hard to heal areas, our swimming pool with the pool chemicals have been very helpful. The chemical appears to speed the healing by helping to dry out the affected areas. On the other hand, when her wounds are drying we apply with vitamin E oils and various other moisturizing ointments to keep her from drying too fast and eliminate the chapping and cracking of her skin. We have also recently purchased a spa for McKenzie for the winter months, this works maybe even better for her.

McKenzie's first birthday, March 2nd, 2002

The water motion from the jets will help lift the old crusty skin to the point that it sheds by itself pain free. It has been great skin therapy for her. She will watch her Pooh DVD and be content in the spa for hours. All yeah, she loves Pooh.

We would like to thank all the wonderful people that we have met through our learning experience. It is nice to know that with everything that is going on in our society today, that we have so many kind and considerate people that we can reach out to.

We went to our first EB conference in Philadelphia last year. The conference was so educational and we learned so much from it, I would encourage that if you have not attended a conference that you would do so. Not only for the your own education, but I think it is good for the children to know that they are not alone in this. The conference was a large group of very kind and considerate people that all have something in common; the fight against EB. I strongly urge the support of the Debra foundation, they are doing so much good for this fight and we all need to keep the fight alive.