Embracing the Extraordinary: My Daughter's Remarkable Journey with DYRK1A Syndrome
Jay Howard
Co-Founder & CCO of HAMMERED - Property auctions, made simple. Author of 'Before the Hammer Falls' & property commentator.
?? Unveiling a World of Extraordinary Love: My Daughter's DYRK1A Syndrome Story ??
With a normally reserved heart overflowing with love, I write the article below based on our own personal journey. Today, I am inviting you into the extraordinary world of my daughter, Abigail, and her remarkable life with DYRK1A Syndrome. A condition so rare that it often dances in the shadows of the unknown, DYRK1A Syndrome has been diagnosed to fewer than 650 beautiful people worldwide. Abigail, my little girl, is one of them. ??
Perhaps you recently watched the BBC show "There She Goes," where the endearing and relatable tale of a family navigating the intricate paths of a child's rare genetic disorder unfolded. In a recent episode, the curtain was lifted, revealing that the child character ‘Rosie’ also faces the challenges associated with DYRK1A Syndrome. This newfound exposure has inspired me to share our own journey and experience.
DYRK1A Syndrome weaves a unique tapestry of experiences, each thread adding depth to our story:
?? A Symphony of Love: Abigail's life is a testament to the extraordinary power of love. From the moment she came into our lives, her radiant spirit illuminated our world, filling our hearts with an unbreakable bond. She may face unique challenges, but our love remains an unwavering beacon of strength and resilience, guiding us through every twist and turn.
?? A Kaleidoscope of Joy: In Abigail's presence, joy blossoms like wildflowers in a field. Her infectious laughter, the sparkle in her eyes, and her enchanting smile breathe life into even the most challenging moments. She reminds us that amidst the struggles, every day holds the potential for boundless happiness.
?? Embracing Resilience: DYRK1A Syndrome may present hurdles, but Abigail's resilience is an inspiration to us all. With a determined spirit that knows no bounds, she conquers each obstacle, defying limitations and reaching for the stars. Her indomitable willpower lights a fire within us to never give up, to believe in the power of resilience.
?? Embracing Differences: Within Abigail's unique journey lies a celebration of diversity and inclusion. Her radiant spirit knows no boundaries, effortlessly uniting people from all walks of life. She teaches us the importance of embracing differences, nurturing a world where every individual's light can shine brightly.
?? A Tapestry of Support: Abigail's journey is not one she walks alone. Our family, friends, and a network of kind-hearted people close to us weaves a tapestry of unwavering support around her. Together, we stand as a fortress, lending a helping hand, sharing laughter, and embracing the challenges with open hearts. It is through this collective love that Abigail finds the strength to thrive.
Let us dive deeper into the hues of DYRK1A Syndrome:
? A Tender Touch: Abigail's gentle touch reveals the reality of her unique muscle tone. We cherish each interaction, understanding the significance of even the smallest gestures. It is in these moments that we recognise her persistence in overcoming any physical limitations.
? Nourishing Love: Feeding challenges may paint a complex picture, but our love for eachother is the nourishment that sustains us all. We have learned the delicate dance of ensuring her needs are met, without the need for tube feeding and the lifelong reliance that solution demands.
? Illuminating Strength: Epileptic storms may cast shadows, but Abigail's resilience shines through. With each seizure, we hold her close, whispering words of comfort, and embracing the knowledge that her strength will carry her through the storm. We stand united, warriors against the dark times.
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? Unconditional Acceptance: Abigail's journey embraces the kaleidoscope of autism spectrum disorders, anxieties, and restless nights. Though the road may be challenging, we approach each day accepting and celebrating her uniqueness. In her, we see the beauty of authenticity.
? A Blossom Unfolding: Abigail's growth tells a story of love's unwavering presence. Her smaller head size at birth, a testament to her uniqueness, blossoms alongside her spirit. We witness the miraculous growth that defies the expectations placed upon her, knowing that she is perfect just as she is.
? The Gift of Perception: Abigail's eyes, a gateway to her soul, shine with a depth that defies words. With every glance, she reminds us to see beyond the physical and embrace the essence of a person intent on being the best she possibly can be.
? A Beautiful Mosaic: Neuroimaging uncovers a masterpiece of Abigail's unique brain. Through its tapestry of findings, we recognize the intricate blend of challenges and strengths that shape her without limiting her.
?? A Tender Face: Abigail's face tells a story of beauty that transcends appearances. Her prominent ears, deep-set eyes, and adorable button nose are a reflection of her courage and strength. As she grows, her unique features continue to paint a portrait of unwavering beauty.
?? A Heart's Melody: DYRK1A Syndrome reaches even the chambers of Abigail's heart. Atrial and ventricular septum defects may rest within her, but her heart's melody remains a symphony which is completely unique to her. With each beat, we celebrate the resilience that echoes through her.
?? Dancing with Grace: Abigail's steps grace the world with an unpredictable rhythm. Her feet, adorned with their beautiful quirks, create a dance all their own—a testament to the poetry of individuality.
?? A Captivating Smile: Abigail's smile is a testament to her strength, resilience and the light that she exudes. Though her journey may deviate from the norm, we see it as an embrace of her individuality. Widely spaced teeth, neonatal surprises, and the unexpected become a part of her captivating smile, radiating warmth and acceptance.
DYRK1A Syndrome weaves a tapestry of love, resilience, and acceptance. If you're curious to learn more about this remarkable condition, I invite you to read the article by Radio Times (https://www.radiotimes.com/tv/comedy/there-she-goes-special-cameo-explained-newsupdate/ ) about the TV show. Together, let us paint a world where every soul, regardless of their challenges, are cherished.
Feel free to reach out with your questions or share your own stories. Let us unite our voices in compassion, fostering a world where every heart is seen, every journey celebrated, and where love knows no bounds. ??
#DYRK1ASyndrome #RareDisorderAwareness #ThereSheGoes #InclusionMatters #UnbreakableLove #DYRK1Aawareness #UniquelyUnique
As a parent to neurodivergent children, the first series of There She Goes resonated deeply. The battles, the judgements and the celebrations of milestones that many would barely acknowledge. The vulnerability of being at the mercy of outside agencies as to the amount of support and understanding within society. I wouldn’t change my children’s neurodiversity, but I would shape the world to make it easier and more inclusive.
What a beautiful piece of writing Jay - from the mummy of another complex neurodivergent, you've nailed it ?? I love seeing Abigail's progress and your beautiful journey together, thank you for sharing it ?? we are all the richer for it ??
Investor & Keynote speaker on Leadership, Investor Mindset, Menopause ?? Inspirational Women Award Winner 2024 ?? 7 series on SkyTV
1 年What an exquisite exploration and explanation, thank you Jay ???? “She reminds us that amidst the struggles, every day holds the potential for boundless happiness.” From what I’ve seen, she really does spread joy wherever she is….. What a gift she is and couldn’t have been sent to 2 more special and wonderful parents ??
Well I’ve been mesmerised by Abigail. She may be neurodivergent but you wouldn’t even know, her cheeky smile and daily shenanigans are all what kids do. And her table etiquette is like mine there’s tremendous joy in that kind of mess! She’s loved and one thing that people should know when your mum and dad love and understand you and allow you to grow with their nurture and love……. Nothing is impossible. It’s great you educate others to understand the condition your daughter is facing and other who have the condition. Abigail is far too busy having fun to be worrying about it all. You’re both amazing parents with a very special little girl who grows everyday into a beautiful unique young lady with so much to look forward to. Well done for staying positive even when challenged. Love conquers everything. And yes the world needs to embrace neurodiversity
Property Solicitor | Property Developer | Property Magazine Legal Contributor
1 年Beautifully described Jay Howard and thank you so much for educating us on it. Abigail is so lucky to have you as an amazing father!