Help Mia Salazar and Family!!
Donation protected
Mia is 23 months old. She has two extremely rare diseases; WAGR-O (O for obesity)and Potocki-Shaffer syndrome missing 97 genes. WAGR syndrome is a rare genetic condition that affects multiple body systems. There are fewer than 500 known cases of this disorder. “WAGR” is an acronym that stands for Wilms tumor, Aniridia, Genitourinary abnormalities, and Range of developmental delays. Potocki-Shaffer syndrome's prevalence is unknown. Fewer than 100 cases have been reported in the scientific literature. It is characterized by multiple bony lumps or spurs on the bones (multiple exostoses) and abnormally large openings in the skull (enlarged parietal foramina). Intellectual disability, malformations of the face (dysmorphism) and premature closure of the fibrous joints between the bones of the skull (craniosynostosis) may also be associated.
Mia has several eye problems. She has two cataracts. One in each eye- nystagmus (movement of eye side to side), aniridia (missing iris) She was diagnosed blind at 4 months. She also gets her kidneys monitor by x-rays every 3 months for Wilms tumors and her eyes every 6 month for Glaucoma. Mia has undergone two procedures for these conditions. She gets fed through a G-tube due to silent aspiration. She also had a seizure around October 2019. In February 2020, Mia end up in the trauma room due to her lungs going into shock. She was diagnosed with RSV in her lungs and pneumothorax . Consequently, her lungs went into shock and she had to spend three nights in PICU as well as two day on reparatory floor. Because now her lung are swollen, she has to use two inhalers to control and avoid the lungs going into shock again. In March 2020, Mia's exams shows that she has holes on her skull. They are about 1 to 2 cm and are exposing the brain at those points. Her bones are thinner and she is consider fragile. She now has been put on vitamin D. As if that wasn't enough, she has a mass growing on her right arm above elbow and she is losing proteins through her urine. Due to her ailments she gets all kind of therapy: PT, OT, Speech, Feed, visual and aquatics.
We are asking for help to keep up with medical and living expenses. Our family has taken a big economical hit since we found out about Mia's syndromes. We have doctors appointment every week on multiple days. All contributions are greatly appreciated and will help to alleviate any financial burdens. There is no donation too small. If you are unable to donate please continue to share her story. Any unused contributions will be donated to IWSA (International WAGR Syndrome Association).
We have recently started a custom apparel printing company from our home to raise awareness for these rare diseases and to also help our family with extra income. Please check it out! One sold t-shirt come a long way for us.
www.dmcreationsatl.com
https://www.facebook.com/DMcreationsatl/
Mia has several eye problems. She has two cataracts. One in each eye- nystagmus (movement of eye side to side), aniridia (missing iris) She was diagnosed blind at 4 months. She also gets her kidneys monitor by x-rays every 3 months for Wilms tumors and her eyes every 6 month for Glaucoma. Mia has undergone two procedures for these conditions. She gets fed through a G-tube due to silent aspiration. She also had a seizure around October 2019. In February 2020, Mia end up in the trauma room due to her lungs going into shock. She was diagnosed with RSV in her lungs and pneumothorax . Consequently, her lungs went into shock and she had to spend three nights in PICU as well as two day on reparatory floor. Because now her lung are swollen, she has to use two inhalers to control and avoid the lungs going into shock again. In March 2020, Mia's exams shows that she has holes on her skull. They are about 1 to 2 cm and are exposing the brain at those points. Her bones are thinner and she is consider fragile. She now has been put on vitamin D. As if that wasn't enough, she has a mass growing on her right arm above elbow and she is losing proteins through her urine. Due to her ailments she gets all kind of therapy: PT, OT, Speech, Feed, visual and aquatics.We are asking for help to keep up with medical and living expenses. Our family has taken a big economical hit since we found out about Mia's syndromes. We have doctors appointment every week on multiple days. All contributions are greatly appreciated and will help to alleviate any financial burdens. There is no donation too small. If you are unable to donate please continue to share her story. Any unused contributions will be donated to IWSA (International WAGR Syndrome Association).
We have recently started a custom apparel printing company from our home to raise awareness for these rare diseases and to also help our family with extra income. Please check it out! One sold t-shirt come a long way for us.
www.dmcreationsatl.com
https://www.facebook.com/DMcreationsatl/
Organizer
Andres Salazar
Organizer
Pendergrass, GA