Addy's Mito Journey
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Today, my daughter’s physician asked me, “How do you envision your daughter’s death?”
Let that sink in for a minute….
For most parents, that question would be shocking and unsettling. Some would even refuse to answer. Over the last 2 years I have had plenty of time to think of this very scenario. Today was the first time I said the answer out loud. “I think Addy will become blind, lose the ability to walk, talk and eventually her lungs will fail.”
Addison (Addy) is our 3 year old miracle. She is battling a rare form of mitochondrial disease, known as Leigh Syndrome. It is a severe neurological disorder characterized by progressive loss of mental and movement abilities. It typically results in death within 2-3 years, usually due to respiratory failure.
As an infant, I knew something was “wrong” with Addy. I felt that for the first year of her life she was either screaming or sleeping. She struggled with reflux, vomiting, abdominal pain and constipation. At 9 months old she had stopped gaining weight and she had stopped eating entirely. At that time we thought the answer was as simple as a feeding tube. Since we had a way to feed her I felt she would eventually “grow out of it.”
As she grew, her list of diagnoses grew. She has been diagnosed with dysphagia, gastroparesis, Sandifer Syndrome, cyclic vomiting syndrome, nystagmus, exotropia, asthma, and metabolic acidosis just to name a few. An MRI done at 2 years old revealed characteristic brain lesions and genetic testing led us to our final diagnosis of Leigh Syndrome.
Addy is the bravest fighter I know. She no longer cries at medical appointments, she handles lab draws with courage and she wins the heart of all who know her. Her favorite thing to do at any appointment is to jump and show off her pink light-up shoes.
Addy is a typical 3 years old who loves books, blocks, baby dolls and anything that involves getting messy. She runs, jumps and plays with her twin sister Norah. She loves pre-school. She always is excited to go, even when she is too sick to attend. She loves Daniel Tiger and Pete the Cat.
Addy’s most recent MRI shows her disease is progressing. We have known it was a possibility but we have prayed it would not be true.
Our hope is to keep Addy as happy as we can for as long as we are blessed to have her. We want to show her everything and let her experience all she can while she is still able to walk, talk and communicate. For our family, the most important thing is that we are able to spend as much time with her as we can creating memories to last a lifetime. It is heart wrenching to create a “bucket list” of things you want your child to see and do before she dies.
Please consider supporting our family while we battle this disease. If you cannot contribute financially, please share our story.
Love,
The Weith Family
(Lisa, Eric, Addy and Norah)
Let that sink in for a minute….
For most parents, that question would be shocking and unsettling. Some would even refuse to answer. Over the last 2 years I have had plenty of time to think of this very scenario. Today was the first time I said the answer out loud. “I think Addy will become blind, lose the ability to walk, talk and eventually her lungs will fail.”
Addison (Addy) is our 3 year old miracle. She is battling a rare form of mitochondrial disease, known as Leigh Syndrome. It is a severe neurological disorder characterized by progressive loss of mental and movement abilities. It typically results in death within 2-3 years, usually due to respiratory failure.
As an infant, I knew something was “wrong” with Addy. I felt that for the first year of her life she was either screaming or sleeping. She struggled with reflux, vomiting, abdominal pain and constipation. At 9 months old she had stopped gaining weight and she had stopped eating entirely. At that time we thought the answer was as simple as a feeding tube. Since we had a way to feed her I felt she would eventually “grow out of it.”
As she grew, her list of diagnoses grew. She has been diagnosed with dysphagia, gastroparesis, Sandifer Syndrome, cyclic vomiting syndrome, nystagmus, exotropia, asthma, and metabolic acidosis just to name a few. An MRI done at 2 years old revealed characteristic brain lesions and genetic testing led us to our final diagnosis of Leigh Syndrome.
Addy is the bravest fighter I know. She no longer cries at medical appointments, she handles lab draws with courage and she wins the heart of all who know her. Her favorite thing to do at any appointment is to jump and show off her pink light-up shoes.
Addy is a typical 3 years old who loves books, blocks, baby dolls and anything that involves getting messy. She runs, jumps and plays with her twin sister Norah. She loves pre-school. She always is excited to go, even when she is too sick to attend. She loves Daniel Tiger and Pete the Cat.
Addy’s most recent MRI shows her disease is progressing. We have known it was a possibility but we have prayed it would not be true.
Our hope is to keep Addy as happy as we can for as long as we are blessed to have her. We want to show her everything and let her experience all she can while she is still able to walk, talk and communicate. For our family, the most important thing is that we are able to spend as much time with her as we can creating memories to last a lifetime. It is heart wrenching to create a “bucket list” of things you want your child to see and do before she dies.
Please consider supporting our family while we battle this disease. If you cannot contribute financially, please share our story.
Love,
The Weith Family
(Lisa, Eric, Addy and Norah)
Organizer
Lisa Dinunzio Weith
Organizer
Hudsonville, MI
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