Kelly's Krusaders
Donation protected
My younger sister Kelly Somerville was diagnosed with Multiple Sclerosis (MS) in September 2010. MS is a chronic, progressive, and often debilitating autoimmune disease that affects the central nervous system, including the brain, spinal cord and optic nerves. More than 2.1 million people worldwide have been diagnosed with MS.
Kelly’s initial symptoms included back pain, numbness and tingling from her waist down and memory issues. Kelly knew something was wrong because before this it was rare she forgot anything! After a series of tests, Kelly was diagnosed with MS. Over the years, she has had intermittent issues, however she continued living a “normal” life with her husband Kent and three sons, Jake, Josh, and Jack.
Until recently not many people other than her immediate family and friends even knew Kelly had MS. Kelly would say, “I don’t want MS to define me.” “I don’t want pity.” So for these reasons not many knew.
Unfortunately, over the last couple of years Kelly’s symptoms have advanced to include frequent pain in her upper back, shoulder and arm, decrease in left hand dexterity, left leg drag, left foot drop, spasms of her lower extremity and spastic gait causing difficulty mainly with walking and FATIGUE! Kelly is one who typically was up at 5am and not done with her day until 11pm. The progression of MS has made this type of schedule nearly impossible to maintain. Her weekends are spent resting and recovering from the week.
Attending her boys' games has always been important to her. Now attending these events are challenging. How far must she walk? Are there bathrooms close by? Are there stairs to climb? Grocery shopping, not necessarily something she enjoyed, but she was able to share the responsibilities, now in most cases it is a task Kent deals with regularly. Thank God for Kent because no matter what, he makes sure all is taken care of for Kelly and the kids. She is blessed to have such a supportive husband. Shopping trips with the kids often ends in online shopping or a trip to one store-one stop and that’s enough for her. Planning a vacation? Not something she even wants to think about…the thought of preparing -EXHAUSTING! Activities she was fortunate enough to do with her nieces and nephews she is not able to do with her own children. Simple activities we all take for granted: walking any significant distance, going on a bike ride, roller skating, ice skating-now not possible for Kelly.
Kelly has tried numerous medications over the years to “treat” the MS, which have included Copaxone, Gilenya, monthly IV infusions of Tysabri and lastly Aubagio. In addition, Kelly would intermittently receive IV steroids which included 3 days of IV infusions. Many never knew Kelly was going through any of these treatments. Her monthly Tysabri infusions were done on Fridays so she would have the weekend at home before returning to work on Monday. All of the MS medications unfortunately come with many side effects some of which can be life threatening. In addition, the cost of these medications are astronomical for the insurance companies, ~ $70,000.00-$80,000.00 yearly.
Unfortunately, Kelly’s left leg drag has grown more prominent and her left hand and arm issues instead of coming and going have now stayed. The numbness once only in her left foot is now bilateral foot numbness. The FATIGUE is impacting her from the moment she gets up. Imagine just the activity of showering and then needing to rest. It seems ridiculous right? The pain in her shoulders and arms are like throbbing toothaches. Pain or not, Kelly continues through her day.
At the beginning of this year, Kelly was exploring yet another MS medication, Lemtrada. A physician friend helped her begin to explore another more promising option…….
Hematopoietic Stem Cell Transplantation, HSCT. HSCT is still in the trial phase so it is not easily available to all.
The words “stem cell transplant” are a bit misleading. This is not the regenerative treatment you may have read about nor will Kelly get stem cells from a donor. The goal of HSCT is to reset Kelly’s immune system so that it no longer attacks the myelin sheath protecting her nerves. Kelly is hopeful for some functional improvements but truly the goal is to "HALT" the progression of this disease. The results of this treatment are produced by using chemotherapy to suppress Kelly’s immune system. The objective is to kill the components of Kelly’s immune system that have the memory to target her myelin. By erasing the immune history, the hope is to essentially stop the auto-immune disease process. Once the immune system is suppressed, Kelly’s own stem cells will be reinfused which will help facilitate the healing of her new immune system. Kelly’s stem cells will be collected prior to the chemo and stored until she is ready for the infusion. The further along you get in the disease progression, the less improvement you see from this treatment so it is now imperative that Kelly is treated as soon as possible. Others who have already undergone the procedure report universally positive results. Everyone emphasizes that the goal is to stop the progression and that IF you recover any of your disability, that is a bonus! The prospect of knowing Kelly won’t get worse would be incredible!
Kelly has applied to the Northwestern University MS study in Chicago, Illinois (Dr. Richard Burt). She also applied to La Clinica Ruiz in Peubla, Mexico (Dr. Guillermo J. Ruiz Argüelles). In February of 2016 Kelly was declined for the Northwestern University study. Even so, she decided to travel to Chicago in March to seek the insight of the neurologist to see what next steps would be recommended since she did not qualify for the study. After careful consideration of the recommendations, Kelly continued to have concerns that she still would not have the best chance of stopping the progression of her disease. She again applied to Northwestern University in May 2016 for a second consideration, and to her surprise they have contacted her. She will travel to Chicago for a two-day evaluation at Northwestern to determine if treatment could be offered to her. If Chicago is not able to offer her treatment, Kelly will then continue her pursuit with La Clinica Ruiz in Peubla, Mexico under the direction of Dr. Guillermo J. Ruiz Argüelles. She is currently on the waiting list for La Clinica Ruiz.
In either case, there are costs that Kelly and her family must incur in her fight to “HALT" MS. If accepted in Chicago, the treatment courses span over approximately 3 months and will require flights back and forth for not only Kelly, but also a caregiver. In addition, there will be costs for lodging for an extended periods of time, transportation while in the city, and food.
If Kelly must travel to La Clinica Ruiz for care, she must travel to Mexico for 28 days along with a caregiver. The cost of care at the clinic is $54,500 and is expected to increase later this year. Because this is out of the country, she will have no healthcare assistance, thus all cost will be an out of pocket expense. This cost does not include the travel expenses, food, etc. while in Mexico.
This disease has been a trying experience for Kelly and her family. She is strong willed, has worked 25 years as a registered nurse, and for the last 6 years has tried to not allow this devastating disease to take over her life. She will continue to fight to have HSCT performed in the US, but if that is not possible then in Puebla, Mexico so she can “HALT” the disease progression so she will suffer no further decline. Kelly wants to be able to be active with her children as they continue to grow-graduation, the prom, visiting colleges, marriages, grandchildren, the list goes on.
Please join our efforts to raise money for the treatment Kelly desperately needs. It's been very sad and painful for us, her family, to watch her slowly decline the past couple of years. To witness her daily struggle and know there is no cure for this debilitating disease is heartbreaking. But now we have hope that WE CAN KNOCKOUT KELLY’S MS IN ITS TRACKS NOW. Help stop the progression of Kelly's MS, it would be the answer to our prayers.
Kelly’s initial symptoms included back pain, numbness and tingling from her waist down and memory issues. Kelly knew something was wrong because before this it was rare she forgot anything! After a series of tests, Kelly was diagnosed with MS. Over the years, she has had intermittent issues, however she continued living a “normal” life with her husband Kent and three sons, Jake, Josh, and Jack.
Until recently not many people other than her immediate family and friends even knew Kelly had MS. Kelly would say, “I don’t want MS to define me.” “I don’t want pity.” So for these reasons not many knew.
Unfortunately, over the last couple of years Kelly’s symptoms have advanced to include frequent pain in her upper back, shoulder and arm, decrease in left hand dexterity, left leg drag, left foot drop, spasms of her lower extremity and spastic gait causing difficulty mainly with walking and FATIGUE! Kelly is one who typically was up at 5am and not done with her day until 11pm. The progression of MS has made this type of schedule nearly impossible to maintain. Her weekends are spent resting and recovering from the week.
Attending her boys' games has always been important to her. Now attending these events are challenging. How far must she walk? Are there bathrooms close by? Are there stairs to climb? Grocery shopping, not necessarily something she enjoyed, but she was able to share the responsibilities, now in most cases it is a task Kent deals with regularly. Thank God for Kent because no matter what, he makes sure all is taken care of for Kelly and the kids. She is blessed to have such a supportive husband. Shopping trips with the kids often ends in online shopping or a trip to one store-one stop and that’s enough for her. Planning a vacation? Not something she even wants to think about…the thought of preparing -EXHAUSTING! Activities she was fortunate enough to do with her nieces and nephews she is not able to do with her own children. Simple activities we all take for granted: walking any significant distance, going on a bike ride, roller skating, ice skating-now not possible for Kelly.
Kelly has tried numerous medications over the years to “treat” the MS, which have included Copaxone, Gilenya, monthly IV infusions of Tysabri and lastly Aubagio. In addition, Kelly would intermittently receive IV steroids which included 3 days of IV infusions. Many never knew Kelly was going through any of these treatments. Her monthly Tysabri infusions were done on Fridays so she would have the weekend at home before returning to work on Monday. All of the MS medications unfortunately come with many side effects some of which can be life threatening. In addition, the cost of these medications are astronomical for the insurance companies, ~ $70,000.00-$80,000.00 yearly.
Unfortunately, Kelly’s left leg drag has grown more prominent and her left hand and arm issues instead of coming and going have now stayed. The numbness once only in her left foot is now bilateral foot numbness. The FATIGUE is impacting her from the moment she gets up. Imagine just the activity of showering and then needing to rest. It seems ridiculous right? The pain in her shoulders and arms are like throbbing toothaches. Pain or not, Kelly continues through her day.
At the beginning of this year, Kelly was exploring yet another MS medication, Lemtrada. A physician friend helped her begin to explore another more promising option…….
Hematopoietic Stem Cell Transplantation, HSCT. HSCT is still in the trial phase so it is not easily available to all.
The words “stem cell transplant” are a bit misleading. This is not the regenerative treatment you may have read about nor will Kelly get stem cells from a donor. The goal of HSCT is to reset Kelly’s immune system so that it no longer attacks the myelin sheath protecting her nerves. Kelly is hopeful for some functional improvements but truly the goal is to "HALT" the progression of this disease. The results of this treatment are produced by using chemotherapy to suppress Kelly’s immune system. The objective is to kill the components of Kelly’s immune system that have the memory to target her myelin. By erasing the immune history, the hope is to essentially stop the auto-immune disease process. Once the immune system is suppressed, Kelly’s own stem cells will be reinfused which will help facilitate the healing of her new immune system. Kelly’s stem cells will be collected prior to the chemo and stored until she is ready for the infusion. The further along you get in the disease progression, the less improvement you see from this treatment so it is now imperative that Kelly is treated as soon as possible. Others who have already undergone the procedure report universally positive results. Everyone emphasizes that the goal is to stop the progression and that IF you recover any of your disability, that is a bonus! The prospect of knowing Kelly won’t get worse would be incredible!
Kelly has applied to the Northwestern University MS study in Chicago, Illinois (Dr. Richard Burt). She also applied to La Clinica Ruiz in Peubla, Mexico (Dr. Guillermo J. Ruiz Argüelles). In February of 2016 Kelly was declined for the Northwestern University study. Even so, she decided to travel to Chicago in March to seek the insight of the neurologist to see what next steps would be recommended since she did not qualify for the study. After careful consideration of the recommendations, Kelly continued to have concerns that she still would not have the best chance of stopping the progression of her disease. She again applied to Northwestern University in May 2016 for a second consideration, and to her surprise they have contacted her. She will travel to Chicago for a two-day evaluation at Northwestern to determine if treatment could be offered to her. If Chicago is not able to offer her treatment, Kelly will then continue her pursuit with La Clinica Ruiz in Peubla, Mexico under the direction of Dr. Guillermo J. Ruiz Argüelles. She is currently on the waiting list for La Clinica Ruiz.
In either case, there are costs that Kelly and her family must incur in her fight to “HALT" MS. If accepted in Chicago, the treatment courses span over approximately 3 months and will require flights back and forth for not only Kelly, but also a caregiver. In addition, there will be costs for lodging for an extended periods of time, transportation while in the city, and food.
If Kelly must travel to La Clinica Ruiz for care, she must travel to Mexico for 28 days along with a caregiver. The cost of care at the clinic is $54,500 and is expected to increase later this year. Because this is out of the country, she will have no healthcare assistance, thus all cost will be an out of pocket expense. This cost does not include the travel expenses, food, etc. while in Mexico.
This disease has been a trying experience for Kelly and her family. She is strong willed, has worked 25 years as a registered nurse, and for the last 6 years has tried to not allow this devastating disease to take over her life. She will continue to fight to have HSCT performed in the US, but if that is not possible then in Puebla, Mexico so she can “HALT” the disease progression so she will suffer no further decline. Kelly wants to be able to be active with her children as they continue to grow-graduation, the prom, visiting colleges, marriages, grandchildren, the list goes on.
Please join our efforts to raise money for the treatment Kelly desperately needs. It's been very sad and painful for us, her family, to watch her slowly decline the past couple of years. To witness her daily struggle and know there is no cure for this debilitating disease is heartbreaking. But now we have hope that WE CAN KNOCKOUT KELLY’S MS IN ITS TRACKS NOW. Help stop the progression of Kelly's MS, it would be the answer to our prayers.
Organizer and beneficiary
Michelle Jamison
Organizer
Pittsburgh, PA
Kelly Somerville
Beneficiary
