Hospital Sant Joan de Déu
Sharing to move ahead

The amazing story of Morgan an extraordinary horsewoman

Morgan and Merell  - Rare Commons
Monday, November 30, 2015

Morgan is a horsewoman for whom the disease hasn´t led any limit to achieve her dreams. Her dedication, effort and perseverance are exemplary. Her family is a great support. In this interview you can know a little more closely Merell and Morgan her mother, who makes with her a glorious tandem.

How is your life day by day? I suppose that you are a very busy girl as usual for the ladies of you age, but what are the different activities in you daily life?

Morgan: In lots of ways my life is much like anyone else, I get up in the morning, brush my teeth, get ready.  It’s just that everything takes longer and is harder. I need help with many things. I don’t like the idea of people with disabilities having activities or programs, it’s just life. I like everyday stuff like shopping, going for coffee and eating out, meeting friends. I love music and singing and dancing of course. I am 23 years old now and I am hoping to start living independently soon!

You are a horsewoman in your free time. Is only an sport for you?

Morgan: Riding is more than just a sport for my free time, it’s my life! I am a full-time athlete. I training at least five days each week, both on my horses and off my horse with pilates, sports physio, mental rehearsal and training, sport psychology. I also do cross-training with cycling and swimming.

What are the benefits for that you recommended this practice?

Morgan: I do it because I like riding but there are many benefits.  I get to mix with nice people and spend my days with horses. It makes me feel free when I am on my horse. I like being able to move around easily. I like the feeling of achieving things, it makes me feel good. I also get a lot of exercise which is good for my health.

I know that you are an amazing dancer... because one month ago we danced with you. Can you explain how you practice dance?

Morgan: I always loved dancing, I just feel free when I dance too. Like when I ride I love the feeling of moving. I have done dance classes since I was young and I like to experiment with new ways of moving or sometimes I just make up my own movements. I really like the music too. Music can make me feel strong and powerful. Especially "Fight Song".

I like dancing to sad songs sometimes too I can just feel the emotion when I move.

Do you know another people from Australia with CDG?

Morgan: I do know some but Australia is very big and we are all spread out. They are mainly younger than me. I love getting to meet people at the conferences in Europe and the US.



What  benefits do you think it can have for a family with a son/daugther CDG to participate in the Rare Commons research project?

Merell: Rare Commons provides a wonderful opportunity for CDG families to contribute to and drive research. With such a small number of patients worldwide, Rare Commons provides a global village of patients, families and researchers based on technology and the internet. It is an extraordinary project and CDG families are fortunate to be amongst the first rare diseases to be included. Sharing knowledge from around the world is the way forward.

Are your family involved in a patients' association?

Merell: We don’t have a formal patients association in Australia at the moment. Australia is as  big in area as England and Europe combined and patients are spread out across the whole of the country. There are only around 12 families that we know of and we communicate through the CDG  Facebook page or informally.

What are the positive aspects of taking part in patient groups?

Merell: With such a rare disease as CDG, often doctors have little experience to offer. Other family members and friends frequently do not know what sort of support to give.  The CDG Global Alliance Facebook page provides information, experience and social and emotional support for families all around the world at all stages of the journey.  It is a place where people understand.

And lastly, can you summarize in one sentence what in your opinion is the most important need that  research could respond to? 

Merell: At the moment I think that the big issue for most families of patients with PMM2 CDG is the unsettling question of whether our children could be helped by mannose therapy. We need to get clarity around that urgently.

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