A Grandparent Spotlight – Anita

Cure JM recently had the pleasure of interviewing a remarkable individual who hails from Canton, Ohio, and brings a wealth of experience and love to her family. With a vibrant history spanning over five decades of marriage, three daughters, and a rich tapestry of grandchildren and great-grandchildren, Anita Mottice’s journey is as inspiring as it is heartwarming. As a retired nurse and devoted wife, Anita shares her profound connection with her family, particularly her grandchild Sydney, who has been diagnosed with Juvenile Myositis (JM). Through our interview, she generously opened up about her family’s journey, offering insights into Sydney’s diagnosis, their evolving relationship, and the challenges and joys they’ve encountered along the way. Join me in discovering the poignant narrative of this extraordinary grandmother and her beloved grandchild.

1) Can you tell me a bit about yourself and your family background?

I was born and raised in Canton, Ohio. I have three living brothers. Both of my parents are deceased. My husband and I eloped in high school. May 1st will be 55 years of marriage. We have 3 grown daughters and 5 grandchildren and 3 great grandchildren. My husband is retired from the steel mill, and I am a retired nurse. 

2) What is your relationship with your grandchild who has JM? How has it evolved over time?

I am in a growing relationship with Sydney. I love to go visit with her and do many different activities together like basketball, lacrosse, and swimming. It is always an adventure when I visit.

3) Could you share your grandchild’s journey with JM? When and how was the JM diagnosed? 

Sydney was diagnosed at age 3. Right before her 4th birthday. She had progressive weakness and pain in her joints and spine. Sydney spent one week in hospital due to pain and weakness. She went through several tests and procedures and finally having a muscle biopsy. The muscle biopsy led to the diagnosis. 

4) How did you and your family react to the diagnosis initially? What were some of the immediate challenges you faced?

We were frightened and curious as we never heard of the diagnosis. The challenges were because she was so young and afraid of the hospital. She is also afraid of needles used during IVIG treatment. 

5) What has been the most challenging aspect of supporting your grandchild through their journey with JM?

Seeing Sydney frightened and her having trouble taking her medications. Giving her the support that she needs is so very important.

6) Can you describe some of the treatments or therapies your grandchild has undergone? How have these impacted their life and your family dynamics?

She gas had numerous hospital stays for IVIG treatments. Also, infusion clinics and PT. It is always a chore to get her to take her medications, but we always reinforce how important it is to take it.

7) How has your perspective on life changed since your grandchild’s diagnosis? What have you learned from this experience?

Watching her play sports makes me appreciate her and how important it is to keep Sydney moving. I’ve learned JM is unpredictable. Always watching for any sights of JM recurring in Sydney. 

8) In what ways do you provide support to your grandchild and your family in dealing with JM?

I am always encouraging Sydney to take her medication. Sydney and her family know we are always here if they need us.

9) Are there any memorable moments or milestones in your grandchild’s journey that stand out to you?

When I watch her play lacrosse and run across that field. It amazes me what all she has been through and keeps going.

10) How do you maintain hope and positivity amidst the challenge of dealing with JM?

We have a lot of faith in God and the Doctors. We know she is in good hands with the doctors and their expertise.

11) Have you encountered any misconceptions or difficulties in raising awareness about JM for your grandchild?

Lack of awareness of JM is the biggest challenge. People never heard of JM.

12) How do you raise awareness and support for JM? What is your involvement with Cure JM?

Spreading the word to raise awareness is so very important. Also, helping with the fundraising events. Getting involved in any area I can help.

13) Have you ever done fundraising for Cure JM?

My daughter and son-in-law do fundraisers and I help and support anyway I can.

14) Can you share any advice or words of wisdom for other families facing similar challenges with JM?

Find the Cure JM Community for support. Support through prayers is very beneficial. Always be available to give your family support when needed.

Traveling with JM

Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress.

GCOM 2024 Round Up

Recently, Cure JM’s Jim Minow was able to attend the Global Conference for Myositis. This conference was not only informational, but was a most impressive day for Cure JM. The conference brings together leading myositis researchers from around the world to share results and collaborate on future projects leading to better care and improved treatments for our JM kids.

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