Some of you may remember a post that I blogged about a year and a half ago about a sweet little girl with a life threatening condition. This is Natalie Flora Fish. She is now 8 years old and faced with a difficult diagnosis--Natalie has Leaky SCIDS, a form of the "bubble boy" disease.
This is a piece of what Tyler (her dad) wrote about that experience 2 years ago:
"On a November night in 2009, Natalie had come down with a cough and fever of a 106 degrees. Around her eyes were a darkness we had not seen before on her, and shivers that were so violent that it gave to look of a siesure. Together, Lisy and I spent the night consoling her with cool compresses and warm baths to sooth the shivers. With each cough her body shook with violence and ended with an exasperated whimper. She was spent physically and mentally. In the early hours of the morning as I struggled to comfort her she gathered enough strength to yell out, “Daddy, what is wrong with me, why am I like this?”
Her question skipped my ears and entered my heart only to tear everything up inside. I had no answer, I could see the disappointment in her eyes. Then next morning I took her to the hospital where the doctors would diagnose her with the H1N1 virus, she would spend a month in the hospital unconscious. The doctors would tell us she was close to death on many occasions during her stay. She turned six years old during that stay, and didn’t know it."
Since my blog post a year and a half ago, Natalie's 2 year old little sister, Alice (remember this post here) has also been diagnosed with the gene mutation. This came as no surprise to the Fish family because they had been in and out of hospitals for the majority of the girls' lives--struggling desperately to fight off minor illnesses and find answers for a path of healing. With each cough or cold that goes around, these girls are often sent to the hospital.
With Leaky SCIDS, it is only a matter of time before they catch a bug that their bodies cannot fight off. Fortunately, modern medicine and critical care have been able to save their lives countless times, but their bodies are only weakened as time progresses. The only potential cure for them is a bone marrow transplant, and that is what they have decided to do.
Today brave little Natalie went in to the hospital for what is expected to be a two month stay as she receives chemotherapy treatments to essentially kill all the life in her body in order for the transplant to be successful. After about a week and a half of chemo, she will receive the transplant and recover in the hospital, followed by strict quarantine for months following. Alice will be admitted to the hospital for the same procedure in a few weeks.
I took this family's pictures in the end of October 2011, the day before I was unexpectedly put on bedrest (good timing! :) Unfortunately, some of the kids weren't feeling very well that day, but we managed to still get some cute ones. These are their last family pictures before they go in for transplant.
They are the SWEETEST family. Lisy and Tyler are two of the nicest, most generous, easy-going, and friendly people you will ever meet. Lisy is my husband's sister and we have lived very close to them for the past 2 years. Over that time, Lisy has become one of my greatest friends and one of the greatest examples to me of perseverance, optimism, faith, and love. They are an amazing family.
Alice & Natalie
Blair & Matthew. Blair will be Natalie's donor.
Tyler & Lisy
Here are a few links to the news articles and videos about the Fish Family:
The Fishes have a blog of updates about their situation, and a linked paypal account available for donations. Feel free to check out their blog, http://fishesformarrowwishes.blogspot.com/ and send prayers their way.
This is a piece of Lisy's blog post yesterday:
We received a call last night from the doctor telling us that we need to be prepared to begin tomorrow with Natalie. Today the final decision was made after a very thorough meeting was held with doctors from Bone Marrow and Infectious Disease. Natalie will arrive at the hospital at 5:00 am tomorrow and will receive her first dose of chemo by 6:00 AM. Since the call yesterday, I have been so emotional. I couldn't hold back the tears after speaking with the doctor. We have planned and prepared for this moment…even being a week delayed, I still fell apart. I guess it just finally hit me…it’s here. I have been drying my eyes all day. I wasn’t expecting it to be easy… I just don’t think a mother can prepare for such an event, no matter the efforts. I had to remind myself that fear and faith cannot be together.
I will make this post brief; I still need to pack her bags, etc. Speaking of packing, Natalie has some very wonderful things to take with her, thanks to many of you. Most importantly Jerome will be washed and ready for another hospital stay. Jerome is a cuddly stuffed elephant that was given to her by her Great Aunt Patsy during one of her earlier more critical hospital stays, since then she has had countless stays and Jerome has been there for all of them.
Thank you to all who have helped us in so many ways, even those whom we have never met. We pray for each of you that you will be blessed and that you will truly feel the love and appreciation we have for you.
As many of you know, I am expecting a baby girl in January and I couldn't be more excited!! Of course, one thing on my list of many things to do before she comes is to design and totally plan out her newborn session...still on my to do list. :) I am no expert with newborn pictures; I do them here and there for people that ask for it, but I wouldn't say that it is what I do best. I think I'll wait until I have a studio room or an easier setup before I jump into doing them more often. They are a lot of work! I do love the sweet little babies that I have worked with though. They are adorable!! This is Evie, a few weeks old, born in August 2011.