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By now, I think it's safe to assume that most of you reading this are familiar with the journey the Holms embarked upon just a few months ago. (If not, I have pasted Ashley's original post from Facebook at the bottom of this message.
Amanda and I thought a lot about this decision before creating a GoFundMe page as another Fund Raising page had already been created. We’re not sure that page has reached all circles of their friends and ultimately decided to proceed in making the page we created public.
As of last weekend, Ashley and Flora left for Minnesota, where they will be living for the next four months during transplant, while Cody, Ruby, Ada and Millie will be holding down the fort in Peachtree City (with help from both of their amazing parents).
While insurance will cover a large portion of their medical expenses, there are so many other out-of-pocket expenses they are going to incur this year that we wanted to take a proactive approach and help them out. At the very least, we want Cody to be able to take the other 3 girls and fly to Minnesota to see their mom and sisters more than once between now and the summer. This awesome family has been dealt a difficult hand and I can't imagine anyone handling it with more courage and determination than these two. We want them to be able to focus everything on their family and let finances be the absolute last thing they worry about.
If you're reading this --- please do not feel obligated to donate anything. I just wanted to share with as many people as possible and if it's within your means and you feel compelled --- do you're thing!
Thanks to All and God Bless!
From Ashley Holm: This is a post that I never thought I would have to write on a page that I never thought I would need to create.
We have four beautiful daughters. And when Flora was born she was as happy and healthy as her three older sisters. When she was born we discovered a small hole in her heart. So tiny, not a big deal at all the cardiologist said. He figured it would close on ints own by the time she was 2 or he would plug it for her in an easy procedure.
In July of this year we moved back to Georgia after almost 6 years living in southern california. Once we got settled, I found Flora a cardiologist and took her for a check up to monitor her heart. That was at the end of August and it has been a whirlwind of doctor appointments, hospital stays, and numerous tests ever since. After lots of testing and lab work we had it confirmed last week that Flora has a rare genetic disease known as MPS 1 or Hurler Syndrome.
Simply put, that means her body doesn't create an enzyme that yours and mine does, called Alpha-L-iduronidase. This enzyme is kind of like the garbage cans of our body. Each cell has this enzyme and it gets rid of complex "proteins" that our body otherwise can't on its own. So, for Flora overtime those "proteins" would build up and cause all sorts of problems. Her organs, heart, tongue just about everything will thicken, thus making it harder and harder for it to function properly resulting in the shutdown of that organ. Her vision can get cloudy and eventually fail. Her hearing can suffer eventually worsening to needing hearing aids or worse. Her bones can grow all weird creating lots of skeletal issues. And lastly, her mind will eventually fail leaving her mentally retarded. The lifespan on average used to be 10-12 years old.
But, there is hope. First of all, I do believe that we serve a great God that even though Flora has this awful disease, we won't travel this journey alone and he has given us modern medicine that in its greatness has so far created a couple of treatments for Hurler that vastly reduce the outcome.
Flora will be getting two kinds of treatments. First, is a bone marrow transplant. We will be having her transplant done at the university of Minnesota in Minneapolis. They are the leading clinic in the country in the field of pediatric bone marrow transplant and they have a ton of specialists who also specialize in MPS 1. We are blessed that we have insurance that covers us going all the way up there for the procedure. And blessed with awesome parents that will help us take care of the older girls while we help heal Flora. The process is a long one starting next week. We will go up to Minneapolis for a week of preliminary appointments with the transplant team and just about every specialist one could think of, to asses Flora and make sure she is a good candidate for transplant. She will also have a port placed and receive her first infusion of the second form of treatment which is enzyme replacement therapy. She will get a 4 hour infusion of this enzyme replacement every week until transplant and for a few months after the transplant until her body starts using the new bone marrow to create the enzyme. The transplant itself won't happen until after the new year as soon as we find a match and get everything ready. The girls are being tested to see if they are a match and if not there is the national donor registry and they will most likely have a match. Once the transplant process starts Flora and I will have to be in Minneapolis for 100 days. Be praying that it will be easier on the girls to be away from me and flora for that long.
What all this means for Flora is that the transplant will basically halt any worsening of any organs or areas of the body that have significant blood flow. So her organs, heart and tongue will all be fine. The second area it helps will be her mind. Children who receive their transplant at least before they turn two usually have very minimal if no cognitive disabilities. Her bones and eyes and ears will still do what they would have before transplant but with surgeries and cornea transplants we have been told most patients nowadays can still have normal functions of those areas. Lastly, life expectancy has been done away with since transplants started happening in the 80s, those children who were transplanted back then are mostly all still alive and doing well.
All this gives us hope. It's not to say that this road won't be hard and that Flora won't have plenty of complications throughout her life, but we have hope and we are ready to start down the road to a lifetime with our baby girl. I'll post updates on here as we get them and when the process starts. Until then we ask that you be in prayer with us for the best possible outcome in everything for Flora and strength and endurance for us and the girls.
Amanda and I thought a lot about this decision before creating a GoFundMe page as another Fund Raising page had already been created. We’re not sure that page has reached all circles of their friends and ultimately decided to proceed in making the page we created public.
As of last weekend, Ashley and Flora left for Minnesota, where they will be living for the next four months during transplant, while Cody, Ruby, Ada and Millie will be holding down the fort in Peachtree City (with help from both of their amazing parents).
While insurance will cover a large portion of their medical expenses, there are so many other out-of-pocket expenses they are going to incur this year that we wanted to take a proactive approach and help them out. At the very least, we want Cody to be able to take the other 3 girls and fly to Minnesota to see their mom and sisters more than once between now and the summer. This awesome family has been dealt a difficult hand and I can't imagine anyone handling it with more courage and determination than these two. We want them to be able to focus everything on their family and let finances be the absolute last thing they worry about.
If you're reading this --- please do not feel obligated to donate anything. I just wanted to share with as many people as possible and if it's within your means and you feel compelled --- do you're thing!
Thanks to All and God Bless!
From Ashley Holm: This is a post that I never thought I would have to write on a page that I never thought I would need to create.
We have four beautiful daughters. And when Flora was born she was as happy and healthy as her three older sisters. When she was born we discovered a small hole in her heart. So tiny, not a big deal at all the cardiologist said. He figured it would close on ints own by the time she was 2 or he would plug it for her in an easy procedure.
In July of this year we moved back to Georgia after almost 6 years living in southern california. Once we got settled, I found Flora a cardiologist and took her for a check up to monitor her heart. That was at the end of August and it has been a whirlwind of doctor appointments, hospital stays, and numerous tests ever since. After lots of testing and lab work we had it confirmed last week that Flora has a rare genetic disease known as MPS 1 or Hurler Syndrome.
Simply put, that means her body doesn't create an enzyme that yours and mine does, called Alpha-L-iduronidase. This enzyme is kind of like the garbage cans of our body. Each cell has this enzyme and it gets rid of complex "proteins" that our body otherwise can't on its own. So, for Flora overtime those "proteins" would build up and cause all sorts of problems. Her organs, heart, tongue just about everything will thicken, thus making it harder and harder for it to function properly resulting in the shutdown of that organ. Her vision can get cloudy and eventually fail. Her hearing can suffer eventually worsening to needing hearing aids or worse. Her bones can grow all weird creating lots of skeletal issues. And lastly, her mind will eventually fail leaving her mentally retarded. The lifespan on average used to be 10-12 years old.
But, there is hope. First of all, I do believe that we serve a great God that even though Flora has this awful disease, we won't travel this journey alone and he has given us modern medicine that in its greatness has so far created a couple of treatments for Hurler that vastly reduce the outcome.
Flora will be getting two kinds of treatments. First, is a bone marrow transplant. We will be having her transplant done at the university of Minnesota in Minneapolis. They are the leading clinic in the country in the field of pediatric bone marrow transplant and they have a ton of specialists who also specialize in MPS 1. We are blessed that we have insurance that covers us going all the way up there for the procedure. And blessed with awesome parents that will help us take care of the older girls while we help heal Flora. The process is a long one starting next week. We will go up to Minneapolis for a week of preliminary appointments with the transplant team and just about every specialist one could think of, to asses Flora and make sure she is a good candidate for transplant. She will also have a port placed and receive her first infusion of the second form of treatment which is enzyme replacement therapy. She will get a 4 hour infusion of this enzyme replacement every week until transplant and for a few months after the transplant until her body starts using the new bone marrow to create the enzyme. The transplant itself won't happen until after the new year as soon as we find a match and get everything ready. The girls are being tested to see if they are a match and if not there is the national donor registry and they will most likely have a match. Once the transplant process starts Flora and I will have to be in Minneapolis for 100 days. Be praying that it will be easier on the girls to be away from me and flora for that long.
What all this means for Flora is that the transplant will basically halt any worsening of any organs or areas of the body that have significant blood flow. So her organs, heart and tongue will all be fine. The second area it helps will be her mind. Children who receive their transplant at least before they turn two usually have very minimal if no cognitive disabilities. Her bones and eyes and ears will still do what they would have before transplant but with surgeries and cornea transplants we have been told most patients nowadays can still have normal functions of those areas. Lastly, life expectancy has been done away with since transplants started happening in the 80s, those children who were transplanted back then are mostly all still alive and doing well.
All this gives us hope. It's not to say that this road won't be hard and that Flora won't have plenty of complications throughout her life, but we have hope and we are ready to start down the road to a lifetime with our baby girl. I'll post updates on here as we get them and when the process starts. Until then we ask that you be in prayer with us for the best possible outcome in everything for Flora and strength and endurance for us and the girls.