Maggie’s Story
The Story of this Foundation begins late January 2024. Maggie had returned to Rochester, NY and was getting started in the second semester of her Freshman year at the University of Rochester. She was enrolled in their STEM Program and was ready to start their Physics in Astronomy focus. Maggie had always had an eye for the stars and was ready to hone in on them.
On February 1, 2024 she would be admitted to Strong Memorial Hospital in Rochester. What started as a sinus infection would become bacterial meningitis. The effect of that would be swelling of and in her brain that would cause severe brain injury. She has seen significant progress and she has encountered heartbreaking, for the family terrifying setbacks. But she is still fighting.
She is currently in a unique, in-between state of her recovery. She is medically stable, able to leave the ICU. But she is recovering from the most recent bout of swelling which sees her in a state called “semi-conscious”. She hears us, she recognizes and responds to us at times. But she is still not able to receive direct rehab.
That condition allowed Maggie to move home in December 2024, the same weekend as her 20th birthday. Lisa resigned from more than two decades as a teacher in order to stay home and be Maggie’s primary caregiver. That will see a change in insurance for their family and with that comes many unknowns in the costs to provide care for Maggie.
Right now we don’t know what the future looks like. But we are going to do everything we can to provide her the best opportunities that we are able. Many people have offered, and further more asked to provide, support for Maggie and her family for her care. This Foundation is an answer to that request.
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Week of January 15
Maggie returns to school for the second semester
January 26
Maggie's initial sickness begins
January 29
Maggie went to the campus clinic
Maggie calls to tell us of severe headache and feeling weak
January 30
Maggie went to the ER, she was treated for a sinus infection and given a "migraine cocktail
Lisa flies to Rochester after school I fly up there after school
Maggie was talking, laughing; Lisa expected to spend the night on Tuesday and head back to AL on Wednesday
January 31
Maggie and Lisa spent the day in the hotel
Maggie never bounced back her headache persisted and she began throwing up and became dizzy
February 1
Maggie started the day at an Urgent Care who quickly sent her to the ER
They spent 5 horrific hours in the ER where she began yelling and finally became incoherent
When she finally got called back they did a CT scan
She wouldn't be still so Lisa had to talk them them into doing it again while Lisa held Maggie still - that saved her life
Maggie was diagnosed with meningitis and was given emergency surgery to place a drain in her head.
February 2
She wasn't responding like normal
They kept very sedated; she couldn't lay flat because ICP pressures would spike
February 5
Another drain was put in place, not sure if her brain herniated overnight
An MRI showed blood flow to her brain
They performed a craniotomy - installed a hinge in her skull that would provide relief to the pressure caused by swelling in and around her brain
The was identified as Fusabacterium Nerophorum
February 6
Sinus surgery to make sure all bacteria and infection is removed
February 7
Maggie had her first cough!
February 8
Maggie flinched and responded to pinching
February 10
MRI showed signs of stroke but brain stem looked better than expected
February 15
Received a trach and PEG tube
February 19
Maggie began breathing on her own and initial weaning off the vent began
February 25
Another MRI again and no new strokes were found
March 1
Maggie received a shunt to address fluid that could build up and cause pressure
March 6
Maggie received a vertical bed!
March 7
We began looking at other facilities that could provide therapy in addition to remaining ICU care needed
March 11
Another MRI and again no new strokes
March 12
Maggie was 100% off the vent
March 22
Maggie was accepted to TIRR Herman in Houston but our insurance rejected it
May 8
Maggie's moved to 6th Floor, the rehab floor, at Strong Memorial
May 24
Maggie's shunt was adjusted and fluid drained
June 5
A battle with constipation and kidney stones begin
June 10
Moved back to 8th floor Neuro ICU for treatment
July 9
Maggie received new braces for her hands
July 16
Maggie moved back to 6th floor to continue rehab
July 21
Maggie had to move back to 8th floor Neuro ICU for treatment
July 24
Maggie was approved for SSI
August 20
Maggie had kidney stone surgery
August 30
Maggie was able to move to Specialty Select at Brookwood Hospital finally bringing her back Birmingham which could provide both ICU-type care as well as rehab services
September 17
Maggie's trach was removed
September 20
Maggie was able to move to Spain Rehab for a higher level of rehab
September 21
Maggie began having seizures
A new drain was put in to relieve fluid and pressure
September 22
Maggie's drain was replaced and blood was drained
September 23
Neurostorming starts
October 1
UAB performed an MRI and it showed no signs to give up the fight
October 3
Maggie received a second shunt
October 9
A new track was put in to get the vent out of her mouth
December 16
Maggie moved home!
We will have a full Journal from Nick and Lisa throughout this journey available soon…
We have been blown away by the both number of and frequency of people who have asked to provide help for us across this journey.
Even more so by the people who have given of their time as well as their resources. We can’t thank you all enough.
We have also come to better understand the needs of families who have someone going through these types of injuries.
Maggie is transitioning home. And with that comes aspects to her care we just haven’t encountered. So we are opening the door for people who have a desire to provide financial support to do that.
How You Can Help
If you are interested in helping what we covet more than anything is your prayers! We have been sustained by the family of faith’s prayers, love, and encouragement. Thank you!
If you would like to provide financial support, please visit our Donate page.
“We want to help this go from experimental to treatment.”
What does the future look like?
What this Foundation is today and what it will become is a journey we are excited about.
Today this is an opportunity for people who want to support Maggie and her family on her journey through treatment and recovery.
The future of this Foundation has three goals. First is to raise awareness for what brain injury can look like. Second is to provide support for families who have been put on a journey similar to ours. Third is to provide support for the further understanding and treatment of brain injury.
One of Maggie’s doctors in Rochester described it like this: “Brain injury is one of the final frontiers of medicine.” They told us that her journey was uncharted territory of medicine.
Lisa said it best, “We want to help this come from experimental to treatment.”
That will be the future purpose of this Foundation.
How You Can Help
If you are interested in helping what we covet more than anything is your prayers! We have been sustained by the family of faith’s prayers, love, and encouragement. Thank you!
If you would like to provide financial support, please visit our Donate page.