Making Connections

One of the biggest surprises for PMSA was a story of a connection made when two mothers realized their families were related. Here is the story of Jamie and Sarah…

At three years old, Jamie’s daughter, Allison, became ill, and during a 19 day stay in the hospital, an MRI revealed lesions on her brain. Now, seven years later, Allison continues to battle symptoms that doctors have suggested could be MS. And, although her family lives in Tennessee, Allison sees doctors at both Children’s Hospital at Vanderbilt and Children’s of Alabama. As many parents do, Jamie began searching the internet for information about pediatric multiple sclerosis and found PMSA. She joined the Facebook group to meet other parents with children with MS and to learn more about the disease.

Around this same time, in Illinois, Sarah found the PMSA Facebook group in her own quest for answers about pediatric MS. Her 13 year old son, Sam, had been fighting unexplained symptoms since he was four years old. After years of doctor upon doctor being unable to diagnose his seemingly neurological issues, he was referred to the Pediatric MS clinic at Children’s Hospital in St. Louis to investigate the suspicion of MS.

Because both Jamie and Sarah took to the internet to find out more about pediatric MS, they found the Pediatric Multiple Sclerosis Alliance. But little did Jamie and Sarah know that when they joined the PMSA family, they would, also, be finding real blood family.

As is the norm on the PMSA Facebook page, when new members join they are greeted by the other members. These greetings turn into conversations as to why people join, what their children’s stories are, the medical journeys that families have been on, and, most often, the comments of relief about “finally finding people that understand”. Because PMSA has grown so much in recent years, it’s not uncommon for parents to realize that they are not only in the same state or country as someone else, but are, in fact in the same city. And it has become common for families to realize that they see the same pediatric MS doctors.

The site administrator noticed that Sarah and Jamie shared the same unique last name and pointed it out to the two women. Since they were both relatively new to PMSA’s page, they hadn’t realized the coincidence. But as the two began to post and message back and forth, their curiosity was peeked despite living in different states. And it was jokingly said that maybe their husbands were long lost cousins. So they questioned their husbands about their relatives, and, after some digging, they discovered this to be the case! Sam and Allison were cousins on their fathers’ sides of their families.

Both moms were shocked at the revelation – they had even more to talk about than just MS! But the discovery did prompt more thorough discussions about their kids’ health histories and experiences. Since that remarkable day, the moms have stayed in touch. Who knows? Maybe these cousins from Tennessee and Illinois will have the chance to meet one day!

An amazing connection was made when two mothers found each other on PMSA’s Facebook page and realized their families were from the same city in Melbourne, Australia. Here is the story of how Carmen and Malinda found each other…
Carmen – Melbourne, Autralia
My 12 year old son, Mitchell, was recently diagnosed with MS, and I went online to learn more about the disease. In my searching, I found the Pediatric Multiple Sclerosis Alliance. I was glad to find other families even though they were from around the world and not in Australia. But not long after I joined the PMSA Facebook group, surprisingly, Malinda joined too. We were amazed to realize that we both lived in Melbourne – only about an hour away from each other! We have since connected via messages and phone calls. I have gained great support and knowledge from Malinda and the experiences with MS that her daughter has gone through. I’m hoping that we can meet up in person soon. We have both spoken with our local MS association in regards to the current lack of an Australian paediatric support group for children and families of children with MS. It is something that we are both keen to see happen moving forward and being able to take part in setting it up.

Malinda – Melbourne, Australia
When Amelia was diagnosed a year ago at age 14, I felt totally alone. There were no Australian support groups for parents whose children have MS. I did not know PMSA existed and it was by chance early this year when I was searching for behaviour issues in children with MS that PMSA came up in my search. It was amazing to hear from parents who shared a similar journey. It didn’t matter what country they were from, all the parents share the same fears and have the same questions. When I found out through PMSA that Carmen was from Melbourne, we connected immediately. I was so happy to share what I had learned over the previous year and compare experiences with someone near me who could relate to the emotional and physical toll of caring for a child with MS. I have spoken with Carmen about my desire to organise an opportunity to get together – which we will make happen in due course!

Ismael is a very active member of PMSA. Although he speaks Spanish and lives in Spain, language and distance are no barrier. He continually offers encouragement to the other PMSA parents and participates in many of the conversations. We greatly appreciate his involvement in helping PMSA raise awareness about Pediatric MS.
This is Adrian’s story as told by his father, Ismael…
Adrian – Huelva, Spain
May 30, 2014, Adrian went to bed with his grandparents. The next day he could not get up, and half of his body was dead. He was unable to move himself or get up. His speech was affected by it along with partial use of only half off his body. Due to being a strong attack, we were admitted to the local hospital in the city for 16 days. Adrian was 5 years old—in one year had 5 outbreaks in a row—between 1 and a half to 2 months apart. During these 5 outbreaks, we did not let him know what was happening – we didn’t understand anything. During the last one, we went to a hospital in another city of Spain, about an hour from where we live. It is a big city with great professionals—for the diagnosis it took 1 and a half years.
And at 6 years of age he was diagnosed with multiple sclerosis. We didn’t know anything about the disease. We had fears, uncertainty, we cried a lot but had to be strong for Adrian. Even though we were being strong, we still suffered.
Here in Spain multiple sclerosis is not valued; there is no awareness. The people are very ignorant, and there is nothing as far as information about childhood MS.
Adrian loves to dance. His favorite singer is Michael Jackson. When Adrian got out of the hospital—he left in a wheel chair— had much physiotherapy, psychology and neuropsychology therapy. We found the MS Association of our city. Adrian is a very intelligent boy, and so we explained what the disease consists of logically, and never have we hid anything from him about his sickness. However, Adrian does not know the gravity of the disease of MS but is very happy. He’s in school and many people love him. He has many friends that support him.
Now Adrian is 9 years old, is working on his first Communion, is very excited, loves music and superheroes. He also likes videogames.
We are a young family, honest and hardworking. We are a low middle-class family, although we don’t lack anything, we try to give the best quality possible so that his future will be easier. We have another younger son who adores his brother. We now live in the present very intensely. We don’t look at the future – don’t want to know, only hope that Adrian will be the happiest he can be. That is why we work everyday day with him.
The symptoms he suffers with frequency are fatigue, cramps in the legs and sensitivity in his fingers; even though he looks like a totally normal child. We also believe the sickness is affecting his growth. He is 2 years behind (late) in growth, so the doctors are looking into this also.
I hope that writing this will be a big help for PMSA.
~ Ismael, father of Adrian

This is the story of Marie; a mum from England who brought her daughter to Texas to meet other pediatric MS families.
Marie – London, England
Caoimhe was 12 when she complained of tingling in her shins and, later, in her fingers. I didn’t pay much attention until I noticed her poor handwriting. When I asked her about why she wasn’t writing correctly, she said she couldn’t feel the pen. I quickly got her to our GP and asked for her to be referred to a paeditrician to check for MS as there is a strong family history. Both of her grandparents have MS. We went two years of going back and forth to hospital…all the while, my child was deteriorating physically and mentally. I went private (private health care), and Caoimhe was finally diagnosed with MS at 15 years old under Dr. Hemingway at Great Ormond St. Hospital.
My journey for support began, and I trawled the Internet looking for a support group. I found PMSA but held back in joining as I was sure it was only for American families. But I eventually joined PMSA, and it was the best move ever for both me and my daughter. I genuinely thought I was the only one to have a child with MS as it was so rare. As the saying goes, “KIDS DON’T GET MS”, but I was to find I wasn’t on my own and there were so many like me – a parent with a child with MS. I realized that it didn’t matter what part of the world I was in; we were all going through the same thing.
After getting to know so many families through the PMSA Facebook group, I decided to take Caoimhe to a paediatric MS camp being held in Texas. I was very keen to go to camp for 2 main reasons:
1. I wanted Caoimhe to see she was not alone and for her to befriend teens that were experiencing the same diagnosis as her. I felt it was something very much needed for her mental wellbeing too.
2. I needed to be with parents that knew what I was going through. And I wanted to meet some of the wonderful supporters that I had gotten to know. These people had become my friends, not just names on a computer screen. I needed to see the real people. It was my way of coping and accepting her diagnosis and not feeling isolated.
Camp was therapy for me. I also met some of the most wonderful people and had a fabulous experience that will always be etched in my mind and heart. And to this day, I’ve maintained close friendships with families around the world.