Michelle’s fight with hydrocephalus
Donation protected
Michelle Grace is an amazing young girl. Her love for all things sparkly and baseball shines through her all day everyday. 
Overcoming prematurity was her first hurdle in life. She was born April 14th 2006 at 29 weeks premature and has endured over 100 brain surgeries since she was 20 days old due to a condition known as hydrocephalus (excessive fluid within the ventricles in the brain) and has FIVE shunts that help drain this fluid. And she will be heading to another brain surgery soon to treat a brain aneurysm. She’s a fighter and we’re all so glad your here with her.
2018 was a tough year for Michelle. Overcoming meningitis twice, more brain surgeries then I would like to remember. But in the end, she smiled again. She laughed. She played. She got back her normalcy.
2019 got off to a fantastic start. Until March. Her teachers started noticing small things here and there and I started tracking them. I brought her into her surgeon and sure enough, her shunt had failed. Our hearts broke all over again. She spent a few days inpatient and we went home for her to get back to her normal. A few days went by and Michelle was beginning to decline again. I thought for sure she was headed in another shunt failure, but her imaging was all clear. For over a month we went back and forth and back and forth with her surgical team. They ordered a head and spine MRI and at the end of May we found that Michelle's ventricle near her brain stem was again growing, but slowly. So they gave us time for her to have a summer.
Enter to July and Michelle began to get worst. Brought her back into the hospital and she was admitted to have surgery by poking holes into the cysts and opening up that fluid collection. A few days passed after surgery and we went home.
August 29th, after coming home and people saying she was being overly emotional, saying her head hurt, not sleeping and crying all night I made the choice to bring her in after a seizure. It was found that the fluid collection had since grown back and they offered to do a shunt revision or a more extensive surgery to relieve the pressure on her brain stem. We opted for the more extensive procedure, during that surgery they found and removed multiple adhesions, a part of her cerebellum and attempted to remove her shunt after discovering it is stuck in her brain stem. They were not able to remove it.
It is now middle of November, she is still inpatient and having more issues that we cannot figure out. She has gone into septic shock twice in the last 6 weeks. Undergone 5 brain surgeries since October (2019), underwent surgery to remove an infected port and needs another brain surgery in the coming days.
Our community has asked in what ways can they help? In any way possible. So many have shared her story, supported us financially, emotionally and physically. We appreciate every single one of you for being here. Walking along this bumpy road with us.
We know that while Michelle is stable right now, she's not done. She has a long fight ahead of her. Hydrocephalus has tried to steal so much from her, but she doesn't let it. She smiles, she laughs, she pushes through harder than anyone I've ever known. She encourages others even when things are hard for her.
Her dad, myself, her siblings; we all long for a little bit of normalcy for her, with her.
While I can never thank you enough for being here and supporting us. We will update often, but if you have Facebook you can come follow Michelles journey here .

Overcoming prematurity was her first hurdle in life. She was born April 14th 2006 at 29 weeks premature and has endured over 100 brain surgeries since she was 20 days old due to a condition known as hydrocephalus (excessive fluid within the ventricles in the brain) and has FIVE shunts that help drain this fluid. And she will be heading to another brain surgery soon to treat a brain aneurysm. She’s a fighter and we’re all so glad your here with her. 2018 was a tough year for Michelle. Overcoming meningitis twice, more brain surgeries then I would like to remember. But in the end, she smiled again. She laughed. She played. She got back her normalcy.
2019 got off to a fantastic start. Until March. Her teachers started noticing small things here and there and I started tracking them. I brought her into her surgeon and sure enough, her shunt had failed. Our hearts broke all over again. She spent a few days inpatient and we went home for her to get back to her normal. A few days went by and Michelle was beginning to decline again. I thought for sure she was headed in another shunt failure, but her imaging was all clear. For over a month we went back and forth and back and forth with her surgical team. They ordered a head and spine MRI and at the end of May we found that Michelle's ventricle near her brain stem was again growing, but slowly. So they gave us time for her to have a summer.
Enter to July and Michelle began to get worst. Brought her back into the hospital and she was admitted to have surgery by poking holes into the cysts and opening up that fluid collection. A few days passed after surgery and we went home.
August 29th, after coming home and people saying she was being overly emotional, saying her head hurt, not sleeping and crying all night I made the choice to bring her in after a seizure. It was found that the fluid collection had since grown back and they offered to do a shunt revision or a more extensive surgery to relieve the pressure on her brain stem. We opted for the more extensive procedure, during that surgery they found and removed multiple adhesions, a part of her cerebellum and attempted to remove her shunt after discovering it is stuck in her brain stem. They were not able to remove it.
It is now middle of November, she is still inpatient and having more issues that we cannot figure out. She has gone into septic shock twice in the last 6 weeks. Undergone 5 brain surgeries since October (2019), underwent surgery to remove an infected port and needs another brain surgery in the coming days.
Our community has asked in what ways can they help? In any way possible. So many have shared her story, supported us financially, emotionally and physically. We appreciate every single one of you for being here. Walking along this bumpy road with us.
We know that while Michelle is stable right now, she's not done. She has a long fight ahead of her. Hydrocephalus has tried to steal so much from her, but she doesn't let it. She smiles, she laughs, she pushes through harder than anyone I've ever known. She encourages others even when things are hard for her.
Her dad, myself, her siblings; we all long for a little bit of normalcy for her, with her.
While I can never thank you enough for being here and supporting us. We will update often, but if you have Facebook you can come follow Michelles journey here .
Organizer
Tara Cope
Organizer
Seattle, WA
