Stand with Hannah in Her Medical Journey

Hello everybody, this is Hannah Leake, and she is only 16 years old. Hannah has been in the fight of her life since a little over 3 years ago. Hannah has multiple complex, chronic, and debilitating diseases. IT’s a very long story, but many of the problems that she now deals with, are due to prolonged medical care and even at times such neglect that it went as far as medical bullying by doctors and so-called medical professionals. After several lengthy hospitalizations and countless tests, and a long expensive trip to Mayo Clinic in Rochester, MN she was finally diagnoses with MALS (Median Arcuate Ligament Syndrome). It took 7 more months to find a surgeon who would even help her. She had open release surgery in Feb. 2023. Because of the seriousness of this condition, plus the lack of resources, and medical concern; her little body was neglected for so long, that she is currently suffering from she has 2 forms of dysautonomia, which are Neurocardiogenic Syncope (NCS) with a Postural Orthostatic Tachycardia Syndrome (POTS) physiology. (Most likely she is suffering from Dysautonomic Failure) Hannah can’t eat food due to partial gastroparesis, and had to have surgery last October to insert a Cystostomy for her bowels. Hannah, also has a form od Diabetes Insipidus, which causes a lot of urinary issues and blood sodium issues. The complexity of all of these issues compound and make it difficult to get things right in her body, because there’s so much cause and effect. Hannah, is very frail and weak and is constantly in and out of the hospitals. There is no cure for dysautonomia. Only treatments to help possibly manage the symptoms better. When she stands upright 30% of her blood in the brain and chest pulls into the legs. Causing headaches, nausea, dizziness, fatigue, elevated heart rate and an already low BP drops 30%. She currently has 30+ symptoms daily.

Living with these serious and rare diseases, has put a heavy strain on the family. Part of the medical care team is in Houston and the others in Dallas. The family live in the DFW area, and have to make frequent tips to Houston to see the specialists there. There are a lot of things that are simply not covered by her insurance and that has really strained the finances. Additionally, with only one family vehicle (which has been constantly in and out of the shop for repairs) there are lots of needs (too many to list here) This family could really use some real help with some finances during this difficult time. In time whenever things come together, Hannah and her parents ae going to start a non-profit organization strictly for the purpose of raising awareness and advocacy for (rare disease Pediatrics) and their families.

Thank you for taking the time to read Hannah’s story. Your support would not only help her and her family fight this battle, but it could bring real encouragement to them just knowing there are so many caring people willing to help in some small way. Please help Hannah continue to fight by contributing to her medical fund.