Meet our Super-Awesome star Nally!
"When Nally was diagnosed, it was a shock. It felt like we were hit with a huge rock.
We got to GOSH and they explained everything. It was still hard to believe. It took a while for us to actually accept.
I believe once we got to 'maintenance' that's when we were able to relax a little."
(Shay, Nally's Mum)
The Final Lap!
Was it easy...? No it definitely was not.
Thankfully, Nally rang the bell on the 15th of May 2023 and today has completed his chemotherapy!
Nally was diagnosed with Leukaemia in January 2020 and everything changed. Today Nally is looking at the gift of a healthier and brighter future! Amazing.
Everything changes when a child is diagnosed with cancer.
"The challenge was actually believing in the consultants and nurses when they told us things were going to be okay. It took us a while to accept that actually. We are grateful to all of them.
The change was that we were in and out of hospital all the time (especially in the 1st year of diagnosis) and everything was about Nally, how he was feeling and his mood and what he wanted. Today, we are forever grateful"
(Shay, Nally's Mum)
"Fierce, courageous and our very own champion".
Nally is one of the success stories of childhood cancer and we are all so proud of him and his beautiful sister Zara (pictured right). Zara has cared for Nally with such unbreakable strength and this has forged a closeness that has grown with time.
In his mum's words:
"Children are truly resilient and Nally has shown an unbelievable quality of strength, courage and determination after he was diagnosed with Leukaemia. He challenged us all and is such a remarkable young man. We have learned that in the face of the diagnosis, Nally is a child like any other. He loves school and enjoys learning. He is a fussy eater and puts me through my paces but his heart of gold and love for his Zara and his friends is a gift that we cherish everyday"
When a child is diagnosed with cancer, lifestyle is impacted by the changes to health, both at school and at home. The pressure mounts as life saving in-hospital clinic appointments take their toll. School is missed as children travel to and fro the hospital. Parents/adult carers need to negotiate time off work to be there for their child/ren. Travel and logistics need to be planned, including meals, parking, childcare and adjustments to longstanding family routines.
The reality...
Managing the fear, anxiety, mental and emotion all stress of the unknown, long waiting times or difficult conversations with doctors and nurses adds incredible pressure to an already high-stress situation.
Hospital beds and chairs soon become home, siblings find themselves caught up somewhere in between and friends and extended family become onlookers into the new chaos that is fast becoming normal.
Can a child or family under such pressure adequately respond to and engage with, such an environment without addressing their wellbeing needs?
Hope, Faith & Love
Living with Leukaemia is life changing. Processing what this diagnosis means, coping with the reality of living with it, going back to school, explaining the changes in your health, behaviour, abilities, learning, socialising, mobility etc can be very challenging for the child and their families. Learning to accept these changes can take a very long time.
That is why we are here to support our children and their families living in Hillingdon and the surrounding areas.
If friendship is all that's needed, we are happy to do just that. If more is required, we want to be there to support reach out with additional support. We are here to offer emotional, spiritual and practical help that fits around you. Together we can.
"Thank God he is doing well now. We are forever grateful for GOSH, Rainbow Ward at Hillingdon, for everyone and to the DLF, one of the charity's that have supported not just Nally, but Zara and the rest of the family."
(Shay, Nally's Mum)
Living life and enjoying it
Nally is no different to other children his age. He loves to have fun, meet with friends, enjoys eating out, playing Switch, chilling, chatting, and spending time in the safety and security of his close friends and family. Nally is bold and courageous, one of the strongest young boys that we have ever met.
Nally's parents, sibling and other close family members have played a fundamental part in his journey. We recognise their role, hear their voices and respect their wishes as family carers and key instruments in the totality of care that Nally and other children on similar pathways receive. This is the future path to improved patient care. Patient voice and medical expertise working together to deliver the best care and outcomes for the child and their family.
"Thank you so much for making the time to meet up today. It was very nice just to relax and have a chat."
That is Why We Do What We Do. The holistic (emotional, practical and spiritual) wellbeing needs of the child and their family from the point of diagnosis, should be captured and substantially supported through dedicated and structured resources beyond the point of diagnosis and initial care planning. This is fundamental to improving the quality of care delivered to that child and achieving better/positive outcomes for them and for their family. We partner with existing organisations to improve the value of this Public Patient Insight and Voluntary Sector Partnership.
"Thank you so much. You look after Nally and all the children so well. God bless you."
What Makes Us Different?
The Daniella Logun Foundation (DLF) is established out of lived experience of caring for Dannie and we are genuinely committed to supporting the wellbeing needs of our Children and Young People diagnosed with cancer and their families.
Without Shay Nally's mum, his dad, his sister or his extended family, Nally would not have had the critical support necessary to mobilise, access and receive the right care, at the right time, at the right place and by the right person, whether at home, hospital or elsewhere.
As parent carers, Nally's parents maintain a duty of care and responsibility that extends above and beyond regular parenting. The same applies to his sibling and other close family members involved in his care. Under the guidance of the oncology and clinical teams, they have learnt how to administer medication, control nutrition and diet and provide physical, emotional and psychological wellbeing support. They have effectively become at-home 'care experts' that understand Nally's wellbeing needs and can contribute to the quality of care delivered by the medical teams that look after Nally at GOSH, Hillingdon hospital and the community services.
This is a vital role that offers great expertise and presents significant opportunities to transform children's palliative care.
Hope, Faith & Love
Many of our parent and family carers continue to work tirelessly, 24hrs a day to care for and ensure their children are well supported to receive important medical care and can go on to live fuller lives in our community.
This work is often unseen, unnoticed, unsupported and unpaid.