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Fundraising for Ashley Janse Van Vuuren – Mowat-Wilson Syndrome

Ashley Janse van Vuuren

Ashley`s story:

Ashley Janse van Vuuren (born 6 October 2015), was diagnosed with Hirschsprungs Disease when she was only six weeks old. Ashley has gone through a lot in her short life already. She had a colostomy, and after that, a 3 hour surgery for an Anal-Rectal Pull-Through.

She was already booked for an MRI scan as she was not progressing like a normal baby. In February 2017, on this day, she had her very first seizure and spent 2 days in ICU. The MRI showed no damage to the brain, just that it was “undersized”.

Ashley was later diagnosed with Mowat-Wilson Syndrome, a genetic condition that affects many parts of the body. Features include abnormality of the eyebrow, deep set eyes, microcephaly (a condition in which a baby’s head is significantly smaller than expected), seizures, external ear malformation, non-verbal.

We are raising funds to help out with costs toward Ashley`s medical needs. Currently, the tests required can not be done in South Africa as the technology is not equipped to test the ZEB2 and chromosomes. Mom is a single-parent and it`s difficult to provide for her 3 children alone. Together we can make a significant difference in their lives, and give Ashley a chance at a better quality life.

Fundraising for Ashley Janse Van Vuuren

One Love Bracelets for Ashley; consisting of teal, grey & black wooden beads with crystals – and a diamante-heart, angel, or feather & made-with-love-heart charm.

To place and order, contact the agent in your area or shop online.

Alternatively, please consider a donation; any and all donations welcome. REF: Ashley Janse v Vuuren.

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