Walaa and Nour's Story - Resilience and Respect
- Leyra (trixie_moon)
- 5 days ago
- 3 min read
Hello everyone,
It's been a long time since I updated this blog! I have graduated from university and I'm currently living abroad as an English teacher. Recently, I received a wonderful message from a follower of this blog, and I would love to share her and her daughter's story and fundraiser with you all.
Walaa is the mother of a wonderful 5-year-old girl with hydrocephalus, Nour, and is raising funds to move to the Netherlands with her family, from where they live in Egypt without legal residency after being displaced from their home in Gaza. Their fundraiser is here. Every donation helps them relocate and access a healthcare system that can give Nour the support she needs so she can become more independent.
Despite Walaa's strong experience in the medical field, she says her knowledge of hydrocephalus was limited, especially when Nour was diagnosed in utero. Nour has suffered several medical complications since her birth as well, including being diagnosed with cerebral palsy and having seizures. Within the Gazan healthcare system, access to specialized care is difficult, and especially so for neurological conditions such as hydrocephalus and cerebral palsy. Nour is five years old and is still unable to walk independently, and continues receiving rehabilitative care so that one day she may be able to do so independently.
When parents and caregivers don’t have the language to articulate the support they and their children need, gaps between the patient and medical personnel only become larger. It’s precisely this reason that I created this blog and website as a high school student. Offering free access to education about a disability millions of people have is so important, for parents, patients, and clinicians alike. Education about hydrocephalus in English is already rare at a level understandable to those not in the medical field. This is even more difficult in other languages, because so much information on hydrocephalus is targeted to the clinician and medical system's views, rather than targeted to help parents and families. It's through this gap that I aim to help families of those living with hydrocephalus, even just a bit.
Walaa's message to me struck a chord because of how clearly she cares for her daughter, and how much she has been willing to engage with someone's lived experience of the condition, even when it isn't the same as her own experience as a parent, nor the same as her daughter's experience. As I shared with her, and I share now with you all: "When I began this project during my secondary school years, I never imagined reaching parents like my parents, who had a child like me. I am so grateful that I have been able to help you feel less alone. Meeting other children with my condition changed my life for the better, and I hope that Nour will be able to experience the same in her future. She has such a bright spirit, and I am sure she will do incredible things."
Being able to offer parents and caregivers reassurances that while things may look different from what society deems “normal”, everything can work out for the better, has been so vital to me. Walaa shared with me that, "I also want to thank your parents, even though I have never met them. Reading your message, I could see how much love, strength, and confidence they gave you growing up. The person you have become is a beautiful reflection of their dedication, and today you are passing that hope on to families like ours. That is a wonderful legacy." My parents deeply loving and respecting who I was growing into, and my own relationship to my disability changed my life. Walaa and her husband do the same for their daughter. Moving to another country with a disabled family member is already a serious and daunting endeavor at the best of times, but doing so can infinitely improve quality of life and health. Moving to the Netherlands can and will help Nour improve so much, so that one day, she may be able to walk independently.
This also comes from a deep place of respect, from Nour's parents to their daughter. They wholly respect her abilities and capacity to learn more each and every day, without once pushing her down with limiting ideas, or things beyond her capacity. This balance is difficult enough for parents of non-disabled children, and is only more difficult when society itself also attempts to intervene with limiting beliefs about what disabled people can do. However, Walaa and her husband hold a deep understanding of what Nour can do, and deeply respect it, as they all strive to help her improve day by day. I am so grateful that Nour has such wonderful, loving, and respectful parents.
With gratitude for you all,
Leyra (trixie_moon)
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