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Hey everyone!
Help support the Jamison family as they navigate their new norm!
From Harper’s mom, Courtney: “Harper Annabel Jamison was born on April 2nd, 2019. On December 24, 2022, our world was turned upside down. This was the beginning of Harper’s diagnosis. After seeing a Tik Tok of a little girl that had all of Harper’s past and present signs and symptoms, we got ahold of Harper’s doctors to get her in for testing. On March 23, 2023, Harper’s Genetics Counselor called and stated that Harper’s labs were back. Based on those, a diagnosis of Sanfilippo Syndrome was indicative. They were still waiting for John and I’s lab work to get back to confirm the diagnosis but at that point, they didn’t have much doubt that this was it. Today, March 28th, 2023, we got a call from Harper’s Geneticist. All the lab work for Harper, John, and I was received. Dr. Bernat made the official diagnosis of Sanfilippo Syndrome. Sanfilippo Syndrome (Mucopolysaccharidosis Type III- A) is a rare terminal genetic disorder classified as a Lysosomal Storage Disorder. There are currently no cures or treatments. Sanfilippo Syndrome causes fatal brain damage, so the syndrome is also known as Childhood Alzheimer’s. Over time Harper will lose the ability to talk, walk, and eat on her own with a life expectancy of mid to late teens. We hope that Harper will qualify for a trial, but there are currently none. This will be a day we will never forget. The call that made all this official. My heart aches for our little girl. We will continue to enjoy every day we get with her. She has been the center of our world since the day she was born. Trying to make every moment count. We will do our best to keep everyone updated through Caring Bridge and through her Facebook Page. We are sharing Harper’s journey to help raise awareness for Sanfilippo Syndrome in hopes of someday finding a cure.”
Caring Bridge: Harper Annabel Jamison Facebook: Hope for Harper Annabel https://curesanfilippofoundation.org/
Help support the Jamison family as they navigate their new norm!
From Harper’s mom, Courtney: “Harper Annabel Jamison was born on April 2nd, 2019. On December 24, 2022, our world was turned upside down. This was the beginning of Harper’s diagnosis. After seeing a Tik Tok of a little girl that had all of Harper’s past and present signs and symptoms, we got ahold of Harper’s doctors to get her in for testing. On March 23, 2023, Harper’s Genetics Counselor called and stated that Harper’s labs were back. Based on those, a diagnosis of Sanfilippo Syndrome was indicative. They were still waiting for John and I’s lab work to get back to confirm the diagnosis but at that point, they didn’t have much doubt that this was it. Today, March 28th, 2023, we got a call from Harper’s Geneticist. All the lab work for Harper, John, and I was received. Dr. Bernat made the official diagnosis of Sanfilippo Syndrome. Sanfilippo Syndrome (Mucopolysaccharidosis Type III- A) is a rare terminal genetic disorder classified as a Lysosomal Storage Disorder. There are currently no cures or treatments. Sanfilippo Syndrome causes fatal brain damage, so the syndrome is also known as Childhood Alzheimer’s. Over time Harper will lose the ability to talk, walk, and eat on her own with a life expectancy of mid to late teens. We hope that Harper will qualify for a trial, but there are currently none. This will be a day we will never forget. The call that made all this official. My heart aches for our little girl. We will continue to enjoy every day we get with her. She has been the center of our world since the day she was born. Trying to make every moment count. We will do our best to keep everyone updated through Caring Bridge and through her Facebook Page. We are sharing Harper’s journey to help raise awareness for Sanfilippo Syndrome in hopes of someday finding a cure.”
Caring Bridge: Harper Annabel Jamison Facebook: Hope for Harper Annabel https://curesanfilippofoundation.org/
Organizer and beneficiary
Courtney Jamison
Beneficiary