Lyrics for Liam - DBA Support Fund
Donation protected
Liam is a 3 year old tornado who at 4 months old was diagnosed with a rare bone marrow failure syndrome called Diamond Blackfan Anemia. People with this syndrome are not able to create their own red blood cells without treatment.
Visit Liam's webpage to get to know him! www.lyricsforliam.weebly.com
Liam is currently responding to steroid therapy, while many others are blood transfusion dependent. Both treatments involve risks and serious side-effects, and all roads typically result in a shortened life expectancy.
Currently, the only curative treatment is a bone marrow transplant. Many children who are steroid dependent stop responding at some point in their lives, increasing risks and complications.
We have always planned to have more than one child, and we are fortunate to live in a world in which science allows us to genetically map Liam and a new potential sibling in order to provide a bone marrow match for a transplant. Liam's future sibling's umbilical cord blood could provide the stem cells to give Liam new marrow and a chance at a typical life expectancy, symptom free, without affecting his sibling in any way.
Liam's genetic mapping has been completed, and we begin down a long road of testing, re-testing, and uncertainty, all with the hope of a stem cell transplant in the end. If we are fortunate enough to take this next step, I will be out of work for at least 3 months.
Please consider making any small donation to help ensure extra security as we move forward on these unpredictable next steps.
If you are feeling brave, please join our Lyrics for Liam Challenge. In the spirit of Liam's undaunted personality and love of music and performance, go to your workplace, a public area (mall, doctor's office, library, etc.), family reunion -- anywhere there's people! -- and offer to sing a song in exchange for a small donation to Liam's genetic mapping! Then either bring the donations to the concert in his honor or donate here on Go Fund Me.
"Today well lived makes every yesterday a dream of happiness, and every tomorrow a vision of hope."
Visit Liam's webpage to get to know him! www.lyricsforliam.weebly.com
Liam is currently responding to steroid therapy, while many others are blood transfusion dependent. Both treatments involve risks and serious side-effects, and all roads typically result in a shortened life expectancy.
Currently, the only curative treatment is a bone marrow transplant. Many children who are steroid dependent stop responding at some point in their lives, increasing risks and complications.
We have always planned to have more than one child, and we are fortunate to live in a world in which science allows us to genetically map Liam and a new potential sibling in order to provide a bone marrow match for a transplant. Liam's future sibling's umbilical cord blood could provide the stem cells to give Liam new marrow and a chance at a typical life expectancy, symptom free, without affecting his sibling in any way.
Liam's genetic mapping has been completed, and we begin down a long road of testing, re-testing, and uncertainty, all with the hope of a stem cell transplant in the end. If we are fortunate enough to take this next step, I will be out of work for at least 3 months.
Please consider making any small donation to help ensure extra security as we move forward on these unpredictable next steps.
If you are feeling brave, please join our Lyrics for Liam Challenge. In the spirit of Liam's undaunted personality and love of music and performance, go to your workplace, a public area (mall, doctor's office, library, etc.), family reunion -- anywhere there's people! -- and offer to sing a song in exchange for a small donation to Liam's genetic mapping! Then either bring the donations to the concert in his honor or donate here on Go Fund Me.
"Today well lived makes every yesterday a dream of happiness, and every tomorrow a vision of hope."
Organizer
Kate Rodger
Organizer
Lowell, MA
