Talia's Hope
Donation protected
Talia is a precious 9 year old girl that has been through more than any child should have to. She is one of 6 kids with 5 of the children living. Talia was diagnosed with a rare Metabolic Disorder called Methylmalonic Acidemia. MMA produces a toxic chemical called Methylmalonic Acid that causes deterioration to her. Then came the most devastating diagnosis. Talia has a rare Progressive Neurodegenerative Disease with no cure, no medication and no treatment at this time to stop or slow the progression of this disease. This is destroying the neurons in her cells located in the cerebellum near her brain stem. Her MRI scans show the deterioration this disease is causing and continues to affect Talia. Unfortunately, a stem cell transplant is not an option for her. This is directly affecting her mobility, muscle control, balance/coordination, expressive/receptive language, cognitive abilities and will continue to affect her quality of life. These medical conditions continue to have a profound affect on Talia. She also has issues with her vision, cognitive ability, GI motility, sleep apnea, mobility, language, history of enlarged liver, history of seizures and neutropenia which affects her ability to fight off viral /bacterial infections. Because Talia is immune compromised she wears a mask at times to limit her exposure to germs. A simple cold can be life threatening. She requires hospitalizations at times due to illnesses and complications. Talia also has low muscle tone called hypotonia which causes her to fall frequently since Talia’s muscles get fatigued easily. She wears leg AFO’s (leg braces) to help her mobility. Due to Talia’s mobility challenges she has a specialized pediatric wheelchair that is used when having to be mobile more than a short distance. Talia also participates in frequent PT, OT and Speech Therapy. She receives regular injections along with frequent medical care at Mayo. Talia stays at the Ronald McDonald House of Rochester while receiving care at Mayo. All of this is exhausting for her and yet even with all that she endures, Talia still holds lemonade stands to help other medical children and adults. She is a kind and compassionate girl who is always thinking about how to help others regardless of all the challenges she deals with.
At this time Talia needs a cure and we are focusing on giving her the best quality of life. Our family is heartbroken and we will never stop searching for a cure. We have already had a child that died tragically and now we are profoundly devastated with all that Talia endures. It’s a horrific feeling to know we can’t stop what is happening to Talia at this time.
Your support will help tremendously to give Talia the best quality of life.
We are so appreciative for all the kindness and compassion given to Talia! Thank you for taking the time to learn more about Talia and how your help benefits her. Your continued support brings hope for Talia! We sincerely appreciate it!
At this time Talia needs a cure and we are focusing on giving her the best quality of life. Our family is heartbroken and we will never stop searching for a cure. We have already had a child that died tragically and now we are profoundly devastated with all that Talia endures. It’s a horrific feeling to know we can’t stop what is happening to Talia at this time.
Your support will help tremendously to give Talia the best quality of life.
We are so appreciative for all the kindness and compassion given to Talia! Thank you for taking the time to learn more about Talia and how your help benefits her. Your continued support brings hope for Talia! We sincerely appreciate it!
Organizer
Angela Eppler-Scheller
Organizer
Cottage Grove, MN
