Team Ryan Strong
Donation protected
Ryan is a strong, witty, intelligent and gregarious young man that is faced with the adversity of a chronic life-limiting, painful illness. Ryan has a genetic condition called Junctional Epidermolysis Bullosa, JEB for short. In his young life he has endured more than most adults do in their lifetime. He lives with his mother, Denise, his mother's husband, Paul, and his younger sister, Emmy.
COVID-19 has brought additional challenges forthe family and the need to be exceptionally cautious with Ryan’s immunocompromised state. Because of this, dedicated nursing care required for his 24-7 care are often out due to exposures, leaving Mom and Dad to overnight care plus working their dayshifts in the healthcare industry. This has been extremely exhausting for all involved and the family is looking forward help defraying costs of training and compensating additional staff. Beyond this, as Ryan gets older, his needs increase and the shift of focus in the home is towards accessibility and promoting independence where possible. Anticipated upcoming expenses include major dental work and an inpatient occupational therapy stay with requisite time off from work alongside of the everyday financial strain of paying for a child with severe special physics needs.
The family appreciates all of your support throughout the years and a hearty THANK YOU to all those who have already donated. This is a trying time for all.
From Denise, Mom:
“EB affects every part of our lives - from Ryan’s physical and mental well-being to our own. Beyond having to care for Ryan and worrying about providing him with the best care possible is the mental health and well-being of our daughter, Emmy. She has endured so much and has missed out on social activities, school and family time. She constantly worries about her brother, and struggles to find her place in caring for him. She is beyond brave and deserves support and recognition of her own.
People often ask me why Ryan can’t walk, or why he has a tracheostomy, or why he has a corneal abrasions. They also ask me about his genetic condition and wonder how a skin disorder could possibly be so severe. I hear things like “his skin looks so good”! Well. That may be true for some of his body, but the truth is, what is covered by his UnderArmour clothing is absolutely horrific.
Remember that the skin is the largest organ of the body. It has several layers of tissue that guards the underlying muscles, bones, ligaments and internal organs. Ryan is missing the protein that makes the glue to hold these layers together. This impacts every facet of his life and body. Internally and externally. It is the reason why I’m constantly looking for good help, the reason that I had to reduce my work hours, the reason I don’t ever sit down!!!! It’s the reason Emmy struggles for my attention and the reason that relationships are slow to blossom. It’s the reason some days I don’t want to talk, and it’s the reason I am a staunch advocate for Ryan at every turn and transition in life.
We were told Ryan would likely die from his junctional epidermolysis bullosa by age 1. He is almost 12. Simply put, his perseverance, strong will, determination and sheer joy in music, animals, cooking and LAUGHTER have kept all of us going.
To be offered a chance to take an investigational drug that may impact all of this is beyond amazing. To think about how we can make a positive shift in not only Ryan’s life, but the lives of other friends who are affected by EB makes me smile. It’s really early and I have zero expectation. Has it been a cure? No? Do we see a slight improvement...I think so...But what it provides us with is HOPE.
Thank you all for your continued support and love ❤️“
Funds raised will help with home renovations, wheelchair vehicle payments, and to help defray medical and nursing costs. They will also be used to focus on the health and well being of Emmy- monies will go towards participation in camps, counseling, and savings to support mental health and well being.
Ryans Personal Website
COVID-19 has brought additional challenges forthe family and the need to be exceptionally cautious with Ryan’s immunocompromised state. Because of this, dedicated nursing care required for his 24-7 care are often out due to exposures, leaving Mom and Dad to overnight care plus working their dayshifts in the healthcare industry. This has been extremely exhausting for all involved and the family is looking forward help defraying costs of training and compensating additional staff. Beyond this, as Ryan gets older, his needs increase and the shift of focus in the home is towards accessibility and promoting independence where possible. Anticipated upcoming expenses include major dental work and an inpatient occupational therapy stay with requisite time off from work alongside of the everyday financial strain of paying for a child with severe special physics needs.
The family appreciates all of your support throughout the years and a hearty THANK YOU to all those who have already donated. This is a trying time for all.
From Denise, Mom:
“EB affects every part of our lives - from Ryan’s physical and mental well-being to our own. Beyond having to care for Ryan and worrying about providing him with the best care possible is the mental health and well-being of our daughter, Emmy. She has endured so much and has missed out on social activities, school and family time. She constantly worries about her brother, and struggles to find her place in caring for him. She is beyond brave and deserves support and recognition of her own.
People often ask me why Ryan can’t walk, or why he has a tracheostomy, or why he has a corneal abrasions. They also ask me about his genetic condition and wonder how a skin disorder could possibly be so severe. I hear things like “his skin looks so good”! Well. That may be true for some of his body, but the truth is, what is covered by his UnderArmour clothing is absolutely horrific.
Remember that the skin is the largest organ of the body. It has several layers of tissue that guards the underlying muscles, bones, ligaments and internal organs. Ryan is missing the protein that makes the glue to hold these layers together. This impacts every facet of his life and body. Internally and externally. It is the reason why I’m constantly looking for good help, the reason that I had to reduce my work hours, the reason I don’t ever sit down!!!! It’s the reason Emmy struggles for my attention and the reason that relationships are slow to blossom. It’s the reason some days I don’t want to talk, and it’s the reason I am a staunch advocate for Ryan at every turn and transition in life.
We were told Ryan would likely die from his junctional epidermolysis bullosa by age 1. He is almost 12. Simply put, his perseverance, strong will, determination and sheer joy in music, animals, cooking and LAUGHTER have kept all of us going.
To be offered a chance to take an investigational drug that may impact all of this is beyond amazing. To think about how we can make a positive shift in not only Ryan’s life, but the lives of other friends who are affected by EB makes me smile. It’s really early and I have zero expectation. Has it been a cure? No? Do we see a slight improvement...I think so...But what it provides us with is HOPE.
Thank you all for your continued support and love ❤️“
Funds raised will help with home renovations, wheelchair vehicle payments, and to help defray medical and nursing costs. They will also be used to focus on the health and well being of Emmy- monies will go towards participation in camps, counseling, and savings to support mental health and well being.
Ryans Personal Website
Organiser
Denise Summers Lavoie
Organiser
Westborough, MA