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The FitzPatrick Family

We heard a "rumor" yesterday and got confirmation this morning that Abby' s geneticist, Dr. Kendall, who we have been waiting to see for almost 3 months now and have an appt. on the 21st, abruptly left clinical practice at Emory last week. I spoke with the Emory Genetics office this morning and they have confirmed that a) there is no one at Emory Genetics willing to treat patients with mito and b) there are now no mito clinicians to refer patients to in Atlanta. In other words, we now find ourselves in a position of having a child with deteriorating health and no doctor who is familiar or can treat her overall disease in the city of Atlanta, the state of Georgia or for that matter, in the southeast.

There is a lot of history here, and too much to type, but we ran into a similar situation when Jack was ill. It was heartwrenching to watch your child have more and more problems and have supposed medical professionals squabbling over "domain." Unfortunately, that is what it comes down to - which researcher gets their name in lights at the end of the road. Now that the link has been made between mitochondria and alzheimers, parkinsons and huntingtons (which many, many more people are affected by than mitochondrial disease) there is a race to the finish to find a cure or a treatment for those diseases, and the "professionals" are not playing well with each other during the race. This leaves the children and adults who need medical care out in the cold.

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Monday and Tuesday we're not good days for Abby. Yesterday we began a concerted effort for her to eat small amounts throughout the day. The teachers and nurseat her school we're absolutely awesome in encouraging her, and she came home SO excited, because she only had nausea when she woke up and it went away with one dose of medicine- she had a great day. Her demeanor last night was so different and it was great. Then she woke up at 1 a.m. not feeling well; wentback to sleep and woke up at 5:45really ill. I gave her medicine and we waited; in 30 minutes we had to give her the 2nd kind of nausea medicine, and she went back to sleep and woke up at 10:15. She was so discouraged - she wanted to go to school, she wanted to work on her notebooks for science and social studies, and she lookslike crap.

I can't stand the emotional roller coaster. I am at a loss and feel like we are spinning our wheels. We haveno doctors that know her well at all - they have all left for various reasons (maybe we should be taking it personally!). And worse yet, should she getmuch worse, we have no oneto consult with in a crisis situation. From our experience, it can happen quickly and systems need to be in place.

I am running out of fight. I am going towrite a letter todayand send it to all of the specialists that currently care for Abby and just lay it on the line with howher life is being affected, and how our family's life isbeing affected. I need toknow that we have done everything that we can - we need to get to Boston if that is the best place to be, or the Cleveland Clinic or somewhere and get some help and direction. I had held out hope that with Dr. Kendall's connections to Boston that we would be able to have her backing to get in there more quickly or get some help at our appt.on the 21st, but obviously that is not to be. I am also going to write to the doctor in Cleveland who took care of Jack and helped us when he was in ICU before he passed away. He no longer sees out of state patients but I am hoping he will make an exception.

I do believe that God is in control of all of this, but I am having a difficult time putting one foot in front of the other. Everywhere we turn there is an obstacle. I am not asking for miracles - just for it not to be so hard. The ups and downs and constant strain of not knowing how the day or night will go, not being able to make any plans, even on an hourly or daily basis, is just wearing us all out. Its reflected I know in me in frustration and snapping at the kids and Kevin (and anyone else who happens to cross my path..) and the same is true for Abby and Kevin, and Seth senses it all. I hate this disease so much. I hate watching her go through it, I resent my good memories of Jack being eroded by the crappy memories of him suffering from this disease every time we go through another procedure or issue with Abby; I hate that I cannot keep Jack's experiences with Jack and let Abby have her own without the constant weight of knowing that there is a chance that it could all have the same result. And mostly I hate that I hate it all and that it has such a power over our lives.

Guess I needed to get that out - needed to clear space in my head to wrap around the next step and move forward.

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Posted in Dentistry Post Date 08/18/2018


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