Glendy and Andreita in America Fund
Donation protected
I am sharing, with permission, the story of my friend Glendy and her daughter Andreita. I met Glendy in an online facebook support group for families dealing with fatty acid oxidation disorders. Thanks to google translate I have been able to be in communication with her since August. Within this past month she left her home city of Arequipa, Peru on an emergency medical visa to Miami, to help her daughter receive the formula she needs to survive. Please read her whole story and help us keep her and her daughter from homelessness while they are here in Miami. This upcoming Monday, November 6th, 2017 will be her last night in an Air B&B that my friends who live in Miami have generously funded for the past few days, as she and her daughter were facing homelessness as of Tuesday, October 31st, 2017. Our friends have reached out to every resource they possibly can in Miami, and nothing is available to provide the needs of Glendy and Andreita on a homeless shelter or women/children shelter level. Our short term goal is to raise money to keep Glendy and Andreita off the streets, even if it is for one extra night. We have long term goals, but for now, our immediate ask is to help provide housing. Here is Glendy and her daugher Andreita's story:
Andreita is 2 years and 9 months old. She was diagnosed with LCHADD at Jackson Hospital in Miami when she was 8 months of age. Andreita was in a coma in the ICU with a blood glucose level of 14. Since diagnosis she has had 5 metabolic crises resulting in rhabdomyolysis (muscle breakdown). In Peru she is the only child with LCHAD and the medical professionals do not know much about LCHAD, nor do they follow protocol properly when crisis occurs. The company that manufactures the specialty formula that Andreita survives off of, called Monogen, does not export to Peru. This makes obtaining the formula difficult and expensive. (For example, for Stella's specialty formula, Lipistart, the cost is $90/can not including shipping which is about $30 per monthly shipment). Anyway, Andreita goes through one can of Monogen daily. Andreita also has a g-tube to help with feedings, as she is unable to eat well enough orally to maintain metabolic stability. Children with LCHAD are unable to fast any longer than 3 to 4 hours unless they have cornstarch. This can allow a child to go more hours without food. Each child is different. Some children go into metabolic decompensation easier than others. Metabolic decompensation can go undetected for a while, but it is deadly. Any type of fasting or over exercise, too much heat or cold, any sickness, even teething for some children can put them into a crisis. A crisis of metabolic decompensation involves the body running low on sugar and medium/short chain fats for energy (LCHAD children can not break down long chain fats, the fat found in food), so it breaks down muscle. Muscle breakdown is dangerous and can cause kidney failure and high levels of potassium in the bloodstream leading to cardiac arrhythmia.
Children with LCHAD are also at risk over time, specifically to heart failure/cardiac arrest, blindness, nerve damage and liver damage. Diet can help prevent some damage, but in some cases diet does not prevent such risk. Like I mentioned, each child is different and presents differently. It is recommended that children with LCHAD have a metabolic specialist and nutritionist, along with a cardiologist and opthalmologist. Since heart and eye risk is high. Children with LCHAD often have blood work taken to check on liver values, long chain fat (acylcarnitine profile), essential fatty acid panel and CK to check for muscle breakdown.
With Glendy being a single mother (her husband left her and Andreita during the first crisis) caring for a child with LCHAD, my heart reaches out to her. This disorder is difficult to deal with in a healthy marriage like mine and Nate's. It is a journey of hardships, but mostly joy because the love one has for their child. Glendy is on a mission to learn more and receive better care just like any parent would do for their child.
If you are able to help financially, or know of any resources in Miami or the surrounding areas, or if you have knowledge on immigration please reach out. Feel free to personal message me any questions.
Thank you,
Sarah
Andreita is 2 years and 9 months old. She was diagnosed with LCHADD at Jackson Hospital in Miami when she was 8 months of age. Andreita was in a coma in the ICU with a blood glucose level of 14. Since diagnosis she has had 5 metabolic crises resulting in rhabdomyolysis (muscle breakdown). In Peru she is the only child with LCHAD and the medical professionals do not know much about LCHAD, nor do they follow protocol properly when crisis occurs. The company that manufactures the specialty formula that Andreita survives off of, called Monogen, does not export to Peru. This makes obtaining the formula difficult and expensive. (For example, for Stella's specialty formula, Lipistart, the cost is $90/can not including shipping which is about $30 per monthly shipment). Anyway, Andreita goes through one can of Monogen daily. Andreita also has a g-tube to help with feedings, as she is unable to eat well enough orally to maintain metabolic stability. Children with LCHAD are unable to fast any longer than 3 to 4 hours unless they have cornstarch. This can allow a child to go more hours without food. Each child is different. Some children go into metabolic decompensation easier than others. Metabolic decompensation can go undetected for a while, but it is deadly. Any type of fasting or over exercise, too much heat or cold, any sickness, even teething for some children can put them into a crisis. A crisis of metabolic decompensation involves the body running low on sugar and medium/short chain fats for energy (LCHAD children can not break down long chain fats, the fat found in food), so it breaks down muscle. Muscle breakdown is dangerous and can cause kidney failure and high levels of potassium in the bloodstream leading to cardiac arrhythmia.
Children with LCHAD are also at risk over time, specifically to heart failure/cardiac arrest, blindness, nerve damage and liver damage. Diet can help prevent some damage, but in some cases diet does not prevent such risk. Like I mentioned, each child is different and presents differently. It is recommended that children with LCHAD have a metabolic specialist and nutritionist, along with a cardiologist and opthalmologist. Since heart and eye risk is high. Children with LCHAD often have blood work taken to check on liver values, long chain fat (acylcarnitine profile), essential fatty acid panel and CK to check for muscle breakdown.
With Glendy being a single mother (her husband left her and Andreita during the first crisis) caring for a child with LCHAD, my heart reaches out to her. This disorder is difficult to deal with in a healthy marriage like mine and Nate's. It is a journey of hardships, but mostly joy because the love one has for their child. Glendy is on a mission to learn more and receive better care just like any parent would do for their child.
If you are able to help financially, or know of any resources in Miami or the surrounding areas, or if you have knowledge on immigration please reach out. Feel free to personal message me any questions.
Thank you,
Sarah
Organizer and beneficiary
Nate Mudd
Organizer
Catonsville, MD
Carly Nelson
Beneficiary
