Our daughter Allegra was born ten years ago, the happiest baby, smiling, laughing and engaging with sparkling eyes. When she was about 18 months old, she changed. By then, she should have been speaking but wasn’t. Doctors at first attributed it to glue ear, as she had endless ear infections. However, gradually, she seemed less and less engaged with the world. We trawled from hospital to hospital for endless assessments. One team of specialists diagnosed sensory processing disorder, another decided she had autism. I drove myself and everyone else mad trying to figure out what was wrong. She had changed from the baby we knew, but why? Three neurologists dismissed me as being in denial that my child had autism. Then we saw a wonderful nutritionist, Lucinda Miller, who recommended we consult a neurologist and after an EEG we discovered that Allegra had epilepsy.
She had been having multiple but undetectable seizures every day in the area that controls speech and language. The autism was, what we now know to be, a common misdiagnosis. A genetic test was ordered to see if this was a specific type of epilepsy and if so whether there was a medication that would cause her to “wake up.”
We were hopeful.
A week later we went read the test result: Rett Syndrome.
As we learnt more about this disorder, the pieces suddenly fit. Why she had developed normally for 18 months, why she presented autistic traits, why she has epilepsy, ADHD and so on. The diagnosis was both a relief that our search for answers had ended, but a crushing pain as the realisation of what the Syndrome entails became clear.
Before the diagnosis I used to worry for Allegra’s future. Now I worry if she will have one at all.
My husband Alex researched and wrote to or met everyone he could find in this field, including the indefatigable Monica Coenraads. I thank God every day for Monica. She explained everything, identified Allegra’s particular variant of Rett and told us what she and RSRT were doing to find a cure.
Monica and RSRT picked us up off the floor and have given us hope.
Allegra is a beautiful, strong willed and funny little girl who loves to run and play and swim. She loves music, animals and being with her family.
We are doing our best to give her the life that she deserves. While we cannot do anything medically, we support RSRT, other charities and members of the community in their efforts to alleviate the suffering of thousands of girls around the world.
Your support will help. Together we can work to find the cure for this cruel disease.
Thank you for reading our page, for helping Allegra and all the other children afflicted with Rett.
#forAllegra
| Name | Donation Amount | Date |
|---|---|---|
| Gautam Chadda | $50 | November 16, 2023 |
| Nishil Khimasia c/o ASPERMONT | $3,500 | September 22, 2023 |
| abisola obasanya | $200 | September 19, 2023 |
| Jimli Barua | $57 | September 18, 2023 |
| Siobhan Lismore-Scott | $10 | September 18, 2023 |
| Anonymous | $200 | September 17, 2023 |
| Will Tuke | $300 | September 10, 2023 |
| Anonymous | $50 | May 08, 2023 |
| Ajit Patel | $250 | March 12, 2023 |
| Laura Kent | $150 | December 31, 2022 |
| Jane Kent | $500 | December 31, 2022 |
| Ira Sohoni | $100 | December 28, 2022 |
| Lynda Spafford | $1,000 | November 10, 2022 |
| Lynda Spafford | $0 | November 10, 2022 |
| Nishil Khimasia | $300 | October 23, 2022 |
| Martha Ford-Adams | $50 | October 22, 2022 |
| Nigel Gray | $100 | October 19, 2022 |
| Timothy Freeman | $100 | October 16, 2022 |
| Timothy Freeman | $100 | October 16, 2022 |
| Penelope Germaux | $100 | October 15, 2022 |
| Ann Outhwaite | $100 | October 15, 2022 |
| Anonymous | $25 | October 14, 2022 |
| Lee Kokuba-Marsh | $300 | October 11, 2022 |
| L Rankin | $1,000 | October 06, 2022 |
| Susan Haynes | $160 | October 06, 2022 |
| Clare Turrall | $50 | October 03, 2022 |
| Thomas Waddington | $500 | January 20, 2022 |
| Vickers, Camilla | $463 | December 13, 2021 |
| Charlie Gordon | $100 | October 14, 2021 |
| Piers Holdsworth Hunt | $500 | June 03, 2021 |
| Oliver Straker | $100 | May 11, 2021 |
| Raintrees International Kindergarten Pte ltd | $1,450 | March 26, 2021 |
| Anonymous | $500 | December 09, 2020 |
| Lin Du | $100 | November 12, 2020 |
| Elizabeth Hammond | $50 | November 12, 2020 |
| Anonymous | $100 | November 10, 2020 |
| Jenny Cameron | $50 | November 02, 2020 |
| David Poraj-Wilczynski | $250 | October 29, 2020 |
| Lesley Connors | $500 | October 25, 2020 |
| Anonymous | $20 | October 24, 2020 |
| Andrew Kent | $1,000 | October 21, 2020 |
| Andrew Kent | $1,000 | October 21, 2020 |
| Sarah Gray | $30 | October 20, 2020 |
| Louise Mamarbachi | $150 | October 19, 2020 |
| Amanda Clarke | $100 | October 17, 2020 |
| Olivia Orr | $100 | October 15, 2020 |
| Colm & Fiona OBrien | $100 | October 14, 2020 |
| Pat Oakes Leighwood | $1,000 | October 12, 2020 |
| Helen Fraser | $100 | October 09, 2020 |
| Lochie Rankin | $1,000 | October 06, 2020 |
| Marina McIntyre | $50 | October 04, 2020 |
| James Orford | $100 | October 04, 2020 |
| Anonymous | $1,000 | October 03, 2020 |
| Jo Townsend | $100 | October 03, 2020 |
| Christopher Kelly | $100 | October 02, 2020 |
| Charlie Angela | $100 | October 02, 2020 |
| Charlotte Colbert | $500 | October 02, 2020 |
| Antonia Robertson | $100 | October 02, 2020 |
| Jess Connors | $5,000 | October 02, 2020 |
| Lauren Sumner | $100 | October 01, 2020 |
| Hannah Connors | $100 | October 01, 2020 |
| Natiah Reid | $20 | October 01, 2020 |
| Sophie Connors | $500 | October 01, 2020 |
| Sarah Aschbrenner | $200 | September 30, 2020 |
| Charlotte Ring | $100 | September 30, 2020 |
| Emily Burkle | $150 | September 30, 2020 |
| Kate Aschbrenner | $500 | September 30, 2020 |
| Charles Glass | $100 | September 30, 2020 |