Determined for Dylan
Donation protected
In July 2017 our son Dylan was diagnosed with Duchenne Muscular Dystrophy,a rare muscle wasting desease for which there is no cure at present.
I remember this time so well. I sat in the room with my husband, the consultant and a nurse. I felt physically sick and my heart was racing. I struggled to concentrate on anything and I became overwhelmed by shock at the thought of my precious boy having such a cruel disease. Shock then turned to grief and days passed wondering how we would piece ourselves back together again. Over time we have become stronger and determined to do our very best for Dylan.
So what is Duchenne Muscular Dystrophy? It is a progressive muscle wasting disease that will eventually affect my son’s whole body. Dylan’s lower limbs will stop working first then his upper limbs and his heart and lungs will be affected along with other complications with his body. He will soon have a life in a wheelchair with restricted movement. This all seems unimaginable for Dylan who to most people would appear healthy. As a toddler his walking was delayed and his physical difficulties became more prominent once he started school and unable to do the same as his peers. Dylan struggles to run, jump, hop, climb and walk up stairs normally. Despite all of this Dylan is happy. He is handsome, tactile, funny and charming. He loves his family and doesn’t let anything faze him. He likes playing Five Nights at Freddys, playing with his plushies and making videos. Dylan’s dream is to be a You Tuber.
Like all children Dylan is special to lots of people, he is a son, grandson, brother, nephew, uncle…yes an uncle and a friend. As a family we have found strength through one another for Dylan. We are determined to find a cure and give him the best treatment and care. We decided to move from our home in Ireland to England where will believe Dylan currently has the best chance. This has meant as a family we are separated. my husband continues to live and work in Ireland and frequently travels back and forth to England to be with us. Dylan will receive treatment under the care of the Evelina unit at Guys Hospital and there is the opportunity for Dylan to participate in clinical trials in the future. This is not available to him in Ireland and his only hope of a cure.
Dylan requires access to a range a therapies and medication to prolong his mobility and independence. Overtime Dylan’s needs will increase.
I have found it helpful to focus on the here and now but I have to be mindful of the future. I now need to begin fundraising for my son so he can have the best care but also so I can contribute to research that will not only benefit my son but other children as well. Donations raised will be used to fund Dylan’s care, specialised equipment and Duchenne Muscular Dystrophy research.
Please share Dylan’s story and help raise awareness of Muscular Dystrophy.
We are determined! We are strong! Determined for Dylan!
From the bottom of our hearts, thank you! Terri
Our Facebook Page
https://www.facebook.com/determinedfordylan/
Our Instagram
@Determined4Dylan
#Determined4Dylan
Our Twitter
@Determined4Dylan
#Determined4Dylan
I remember this time so well. I sat in the room with my husband, the consultant and a nurse. I felt physically sick and my heart was racing. I struggled to concentrate on anything and I became overwhelmed by shock at the thought of my precious boy having such a cruel disease. Shock then turned to grief and days passed wondering how we would piece ourselves back together again. Over time we have become stronger and determined to do our very best for Dylan.
So what is Duchenne Muscular Dystrophy? It is a progressive muscle wasting disease that will eventually affect my son’s whole body. Dylan’s lower limbs will stop working first then his upper limbs and his heart and lungs will be affected along with other complications with his body. He will soon have a life in a wheelchair with restricted movement. This all seems unimaginable for Dylan who to most people would appear healthy. As a toddler his walking was delayed and his physical difficulties became more prominent once he started school and unable to do the same as his peers. Dylan struggles to run, jump, hop, climb and walk up stairs normally. Despite all of this Dylan is happy. He is handsome, tactile, funny and charming. He loves his family and doesn’t let anything faze him. He likes playing Five Nights at Freddys, playing with his plushies and making videos. Dylan’s dream is to be a You Tuber.
Like all children Dylan is special to lots of people, he is a son, grandson, brother, nephew, uncle…yes an uncle and a friend. As a family we have found strength through one another for Dylan. We are determined to find a cure and give him the best treatment and care. We decided to move from our home in Ireland to England where will believe Dylan currently has the best chance. This has meant as a family we are separated. my husband continues to live and work in Ireland and frequently travels back and forth to England to be with us. Dylan will receive treatment under the care of the Evelina unit at Guys Hospital and there is the opportunity for Dylan to participate in clinical trials in the future. This is not available to him in Ireland and his only hope of a cure.
Dylan requires access to a range a therapies and medication to prolong his mobility and independence. Overtime Dylan’s needs will increase.
I have found it helpful to focus on the here and now but I have to be mindful of the future. I now need to begin fundraising for my son so he can have the best care but also so I can contribute to research that will not only benefit my son but other children as well. Donations raised will be used to fund Dylan’s care, specialised equipment and Duchenne Muscular Dystrophy research.
Please share Dylan’s story and help raise awareness of Muscular Dystrophy.
We are determined! We are strong! Determined for Dylan!
From the bottom of our hearts, thank you! Terri
Our Facebook Page
https://www.facebook.com/determinedfordylan/
Our Instagram
@Determined4Dylan
#Determined4Dylan
Our Twitter
@Determined4Dylan
#Determined4Dylan
Organizer and beneficiary
Terri Walsh
Organizer
Dublin
Greg Walsh
Beneficiary
