In October 2020, doctors diagnosed our niece, Caymie, with Myasthenia Gravis (MG). Myasthenia Gravis is a rare autoimmune disorder that weakens the body's muscles and threatens the patient's ability to eat, drink, talk, and breathe normally.
Since Caymie celebrated her ninth birthday in August, she has started to deteriorate from the vibrant, fun, and energetic little girl we once knew. She started waking up at night unable to swallow, her speech changed, and her eyes and smile started to dim. Little did we know at the time that her immune system had started to weaken the muscles in her face and throat. After several doctor visits and a trip to the emergency room, she received transport to a local area children's hospital by ambulance where the doctors determined her condition and began an IV treatment.
After several days in the hospital, Caymie returned home with a temporary treatment plan put in place by medical staff. She began taking two different medications, one of which requires her to be woken up in the middle of the night as it is imperative to Caymie's health that she receive a regular dose every six hours. This impacts the regular sleep routine of both her and her mom, Wendy. This medication is difficult to find as standard pharmacies do not carry it. In addition to this new normal, the doctors referred her to specialists in Chicago for further consultation, guidance, and treatment.
A few days before Thanksgiving, Caymie had an appointment at Ann & Robert H. Lurie's Children's Hospital of Chicago. During this appointment, the doctor determined that she needed to be admitted to the ICU for plasmapheresis to help manage her MG symptoms. Wendy remains by Caymie's side at all times while the doctors continue to evaluate and care for her.
Caymie and Wendy could use your help. There are a variety of practical ways that you can assist them during their time of need. First, we ask that you begin to pray for their strength, comfort, and peace and for the medical staff's wisdom, patience, and perseverance. As you can imagine, it is not easy to be separated from your loved ones during the holidays, especially under such difficult circumstances, and your prayers will help navigate our family during this uncertain time. Next, if you are financially able, please consider making a donation, no matter how big or how small, to our campaign today. Please know that your generosity is greatly appreciated and will help with growing medical expenses, anticipated future travel to Chicago and/or Peoria, daily living expenses, and unpaid time off from work as Wendy adjusts to caring for a child with MG. Finally, if you are looking for additional ways to give or cannot make a financial donation at this time, please also consider getting involved by making a blood/plasma donation. Although, Caymie has been able to use her own blood in her treatment plan this is not always the case. You can schedule an appointment by calling your local Red Cross today or searching online for nearby and upcoming blood drives in your area.
The need for blood and plasma is constant and we want to make sure that we do our part to ensure a healthy level of blood supply across the nation. You can rest assured that our family, and others, will be forever thankful for your thoughtfulness. If you use the Blood Donor American Red Cross mobile app to sign up for your appointment, you will even be informed of where and how your gift helped somebody else! Plus, blood donation heroes always earn a well-deserved sugary and/or salty snack at the end of their appointment! You can learn more about the donation process and check your eligibility by visiting https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements.html or by talking with your primary care physician.
For more information on Myasthenia Gravis you may review the following links from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040
Please contact your tax advisor to determine if your monetary donation is tax-deductible.
Thank you for taking the time to read about Caymie, our Mighty Girl! Please feel free to share our campaign with others who would like to get involved!
Since Caymie celebrated her ninth birthday in August, she has started to deteriorate from the vibrant, fun, and energetic little girl we once knew. She started waking up at night unable to swallow, her speech changed, and her eyes and smile started to dim. Little did we know at the time that her immune system had started to weaken the muscles in her face and throat. After several doctor visits and a trip to the emergency room, she received transport to a local area children's hospital by ambulance where the doctors determined her condition and began an IV treatment.
After several days in the hospital, Caymie returned home with a temporary treatment plan put in place by medical staff. She began taking two different medications, one of which requires her to be woken up in the middle of the night as it is imperative to Caymie's health that she receive a regular dose every six hours. This impacts the regular sleep routine of both her and her mom, Wendy. This medication is difficult to find as standard pharmacies do not carry it. In addition to this new normal, the doctors referred her to specialists in Chicago for further consultation, guidance, and treatment.
A few days before Thanksgiving, Caymie had an appointment at Ann & Robert H. Lurie's Children's Hospital of Chicago. During this appointment, the doctor determined that she needed to be admitted to the ICU for plasmapheresis to help manage her MG symptoms. Wendy remains by Caymie's side at all times while the doctors continue to evaluate and care for her.
Caymie and Wendy could use your help. There are a variety of practical ways that you can assist them during their time of need. First, we ask that you begin to pray for their strength, comfort, and peace and for the medical staff's wisdom, patience, and perseverance. As you can imagine, it is not easy to be separated from your loved ones during the holidays, especially under such difficult circumstances, and your prayers will help navigate our family during this uncertain time. Next, if you are financially able, please consider making a donation, no matter how big or how small, to our campaign today. Please know that your generosity is greatly appreciated and will help with growing medical expenses, anticipated future travel to Chicago and/or Peoria, daily living expenses, and unpaid time off from work as Wendy adjusts to caring for a child with MG. Finally, if you are looking for additional ways to give or cannot make a financial donation at this time, please also consider getting involved by making a blood/plasma donation. Although, Caymie has been able to use her own blood in her treatment plan this is not always the case. You can schedule an appointment by calling your local Red Cross today or searching online for nearby and upcoming blood drives in your area.
The need for blood and plasma is constant and we want to make sure that we do our part to ensure a healthy level of blood supply across the nation. You can rest assured that our family, and others, will be forever thankful for your thoughtfulness. If you use the Blood Donor American Red Cross mobile app to sign up for your appointment, you will even be informed of where and how your gift helped somebody else! Plus, blood donation heroes always earn a well-deserved sugary and/or salty snack at the end of their appointment! You can learn more about the donation process and check your eligibility by visiting https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements.html or by talking with your primary care physician.
For more information on Myasthenia Gravis you may review the following links from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040
Please contact your tax advisor to determine if your monetary donation is tax-deductible.
Thank you for taking the time to read about Caymie, our Mighty Girl! Please feel free to share our campaign with others who would like to get involved!