Help Katie Fight MS
Donation protected
This is a long story and I hope you don’t mind, because my family needs your help!
My daughter, Katie Kelly O’Donnell was diagnosed with MS in February of 2016. At the time of this diagnosis, Katie was a mom, a wife, a daughter, a sister, an aunt, a niece, a cousin, a friend, a teacher, an active runner and a traveler. Katie’s daughter, Áine, was 15 months old. Shortly after Áine’s birth, Katie started to notice some difficulty with her balance, her memory and word retrieval. She thought these symptoms were postpartum related or stress after going back to work with a baby.
Fortunately, her primary care doctor listened to her concerns and ordered blood tests and an MRI. Two days later Katie was told she had pernicious anemia, which is serious low vitamin B levels and often has similar symptoms to MS. This was a big relief for someone who thought she might have brain cancer! Her primary doctor encouraged her to go ahead with the MRI scheduled for 2 days later. As soon as the radiologist read the report, Katie was sent to the emergency room and was admitted to the MGH neurology floor.
After several more tests, including a lumbar puncture and consultation with many doctors Katie was told the MRI results showed 70 – 90 active liaisons on her brain and her spine. She had Relapsing Remitting MS (RRMS). RRMS is consider the best form of MS (if there is such a thing) and many people who have RRMS live full and happy lives. RRMS is a chronic, disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body.
That weekend Katie started to imagine her brain full of crawling snakes like Medusa!
After 4 days of treatment with steroids, Katie went home believing that she would be back to her students the next week. Her family and doctors kept suggesting she needed more time to allow her brain to recover.
Six weeks later I was with Katie when I noticed her acting strangely and she admitted that she was seeing double. The ride from Weymouth to MGH was stressful as Katie saw 2 cars instead of 1 and 2 people when I only saw 1! At the hospital Katie saw disjointed body parts of people walking the hallways. How do you explain this without sounding crazy? She was admitted for observation and the new MRI showed more MS activity. We were in a nice room with a great view of the moon on the Charles River. Katie asked us why the moon was moving, kind of dancing around. We looked at each other with concern and explained that the moon was not moving, it was just hanging in the sky.
Katie is a fighter, she did not give up and she ran a 5K road race the next week with a friend.
At this point, she realized she was not going back to work for a long time. This was a tough realization. With this relapse we all realized that this disease was much worse than we originally thought and her doctors told her she had a much more aggressive form of RRMS than they originally thought. This relapse meant Katie was not able to work, take care of her daughter, run by herself, sing the alphabet song, read a book, drive or get out of bed on some days. She had severe headaches from her forehead to her tailbone.
The doctors started Katie on a new drug, Tysabri. Tysabri is administered intravenously every 4 weeks at the hospital. This drug seemed to prevent flare ups for a time being, however, the fatigue and pain has never gone away.
In October of 2016, about 7 months after her diagnosis, in pouring rain, Katie and her friend, Kara, ran the BAA ½ marathon and finished without stopping. They promised each other they would not cry along the way. I was on the side lines with my sister and we cried! When they finished, Katie and Kara allowed themselves to cry.
Katie stayed hopeful and with the help of family and friends who drove her to and from work, prepared meals and looked after Áine, she was able to return to work full time in February of 2017, 1 year after her diagnosis. She was happy to be working again, but it was exhausting. Every day when she went home from work, she gave Áine as much attention as she could and went to bed crying, before sun had set. She finished the school year and with the help of her principal, she was able to secure a 3 day a week position for the fall of 2017.
Last month Katie was excited to spend a rare Saturday evening out with friends, playing bingo at the church all. She sat down and even before taking a sip of a drink, she knew that something was happening in her brain. Two friends helped her out to the car and they drove her to my house because it was closest. One look at her and I knew we had to go the MGH immediately! This was another scary ride to through Boston because Katie could not hold a bottle of water in her hands, she was shaking all over and her jaw started to droop. At the hospital, they originally thought she was having a stroke or a brain aneurysm and she got plenty of attention. These were quickly ruled out we breathed a sigh of relief, but it was MS. She was admitted again, was given high doses of steroids, was released the next day and missed 1 week of work. Since this relapse, the fatigue is worse, her memory is worse, her word retrieval is worse and her debilitating headaches are worse.
We decided to look for other treatments. The only treatment shown in clinical trials to be effective at halting the progression of RRMS is hematopoietic stem cell transplant (HSCT). In addition to halting MS progression, some patients experience reversal of symptoms. This treatment uses high doses of chemotherapy to wipe out the immune system, and then the patient’s own bone marrow stem cells are transplanted back in the body to help rebuild an immune system with no memory of MS. Without HSCT, there is a 100% probability that Katie’s RRMS will continue to progress. At this point, this is the best option to halt the progression of this disease and maybe erase some of the systems. This is not a cure, but it is hope.
Since HSCT is very limited in the States, Katie and I will travel to Mexico so that she can receive HSCT. Insurance will not cover the cost of the procedure. We are seeking donations to offset the cost of HSCT and follow-up care, which is approximately $60,000.
Katie wants to have this procedure because she is tried of living a half a live. She beats herself up because she worries that she is not a good enough mother. In her words, “Áine deserves better.” Doctors consider Katie “stable” but she goes to work every day with debilitating headaches and exhaustion.
We are grateful for the wonderful care Katie has received at MGH, for our large, loving family and a great community of friends. We will be holding a fundraiser sometime early this summer. We hope you will join us or consider donating thru this site.
Fear has two meanings: Forget Everything and Run or Face Everything and Rise! Katie has chosen to Rise!
My daughter, Katie Kelly O’Donnell was diagnosed with MS in February of 2016. At the time of this diagnosis, Katie was a mom, a wife, a daughter, a sister, an aunt, a niece, a cousin, a friend, a teacher, an active runner and a traveler. Katie’s daughter, Áine, was 15 months old. Shortly after Áine’s birth, Katie started to notice some difficulty with her balance, her memory and word retrieval. She thought these symptoms were postpartum related or stress after going back to work with a baby.
Fortunately, her primary care doctor listened to her concerns and ordered blood tests and an MRI. Two days later Katie was told she had pernicious anemia, which is serious low vitamin B levels and often has similar symptoms to MS. This was a big relief for someone who thought she might have brain cancer! Her primary doctor encouraged her to go ahead with the MRI scheduled for 2 days later. As soon as the radiologist read the report, Katie was sent to the emergency room and was admitted to the MGH neurology floor.
After several more tests, including a lumbar puncture and consultation with many doctors Katie was told the MRI results showed 70 – 90 active liaisons on her brain and her spine. She had Relapsing Remitting MS (RRMS). RRMS is consider the best form of MS (if there is such a thing) and many people who have RRMS live full and happy lives. RRMS is a chronic, disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body.
That weekend Katie started to imagine her brain full of crawling snakes like Medusa!
After 4 days of treatment with steroids, Katie went home believing that she would be back to her students the next week. Her family and doctors kept suggesting she needed more time to allow her brain to recover.
Six weeks later I was with Katie when I noticed her acting strangely and she admitted that she was seeing double. The ride from Weymouth to MGH was stressful as Katie saw 2 cars instead of 1 and 2 people when I only saw 1! At the hospital Katie saw disjointed body parts of people walking the hallways. How do you explain this without sounding crazy? She was admitted for observation and the new MRI showed more MS activity. We were in a nice room with a great view of the moon on the Charles River. Katie asked us why the moon was moving, kind of dancing around. We looked at each other with concern and explained that the moon was not moving, it was just hanging in the sky.
Katie is a fighter, she did not give up and she ran a 5K road race the next week with a friend.
At this point, she realized she was not going back to work for a long time. This was a tough realization. With this relapse we all realized that this disease was much worse than we originally thought and her doctors told her she had a much more aggressive form of RRMS than they originally thought. This relapse meant Katie was not able to work, take care of her daughter, run by herself, sing the alphabet song, read a book, drive or get out of bed on some days. She had severe headaches from her forehead to her tailbone.
The doctors started Katie on a new drug, Tysabri. Tysabri is administered intravenously every 4 weeks at the hospital. This drug seemed to prevent flare ups for a time being, however, the fatigue and pain has never gone away.
In October of 2016, about 7 months after her diagnosis, in pouring rain, Katie and her friend, Kara, ran the BAA ½ marathon and finished without stopping. They promised each other they would not cry along the way. I was on the side lines with my sister and we cried! When they finished, Katie and Kara allowed themselves to cry.
Katie stayed hopeful and with the help of family and friends who drove her to and from work, prepared meals and looked after Áine, she was able to return to work full time in February of 2017, 1 year after her diagnosis. She was happy to be working again, but it was exhausting. Every day when she went home from work, she gave Áine as much attention as she could and went to bed crying, before sun had set. She finished the school year and with the help of her principal, she was able to secure a 3 day a week position for the fall of 2017.
Last month Katie was excited to spend a rare Saturday evening out with friends, playing bingo at the church all. She sat down and even before taking a sip of a drink, she knew that something was happening in her brain. Two friends helped her out to the car and they drove her to my house because it was closest. One look at her and I knew we had to go the MGH immediately! This was another scary ride to through Boston because Katie could not hold a bottle of water in her hands, she was shaking all over and her jaw started to droop. At the hospital, they originally thought she was having a stroke or a brain aneurysm and she got plenty of attention. These were quickly ruled out we breathed a sigh of relief, but it was MS. She was admitted again, was given high doses of steroids, was released the next day and missed 1 week of work. Since this relapse, the fatigue is worse, her memory is worse, her word retrieval is worse and her debilitating headaches are worse.
We decided to look for other treatments. The only treatment shown in clinical trials to be effective at halting the progression of RRMS is hematopoietic stem cell transplant (HSCT). In addition to halting MS progression, some patients experience reversal of symptoms. This treatment uses high doses of chemotherapy to wipe out the immune system, and then the patient’s own bone marrow stem cells are transplanted back in the body to help rebuild an immune system with no memory of MS. Without HSCT, there is a 100% probability that Katie’s RRMS will continue to progress. At this point, this is the best option to halt the progression of this disease and maybe erase some of the systems. This is not a cure, but it is hope.
Since HSCT is very limited in the States, Katie and I will travel to Mexico so that she can receive HSCT. Insurance will not cover the cost of the procedure. We are seeking donations to offset the cost of HSCT and follow-up care, which is approximately $60,000.
Katie wants to have this procedure because she is tried of living a half a live. She beats herself up because she worries that she is not a good enough mother. In her words, “Áine deserves better.” Doctors consider Katie “stable” but she goes to work every day with debilitating headaches and exhaustion.
We are grateful for the wonderful care Katie has received at MGH, for our large, loving family and a great community of friends. We will be holding a fundraiser sometime early this summer. We hope you will join us or consider donating thru this site.
Fear has two meanings: Forget Everything and Run or Face Everything and Rise! Katie has chosen to Rise!
Organizer
Mary Kelly
Organizer
Boston, MA
