Smiley Riley Garden Project
Donation protected
Riley is a tiny, happy, rolling, non verbal, epileptic, globally delayed, cancer fighting 6 year old miracle with a heart for love, laughter and living!
At just 19 weeks gestation the investigations started to diagnose our little bump and teach us what strength such a tiny human could have. Riley was diagnosed with a bilateral cleft lip and palate, small gestation then wolf hirschhorn syndrome after the lengthy wait of amniocentesis results. Consultants were very clear that Rileys chance of survival would be extremely minimal if he even survived the remainder of the pregnancy and he’d be facing a life time of medical and physical challenges! Termination at 25 weeks was offered and advised but after days of tears, heart ache and exploring all options we could not go through with a termination, “if he’s survived/battled 25 weeks of pregnancy already, how can we take his life and not give him a chance? let’s, let his body decide when it’s no longer strong enough and we’ll have given him every chance we possibly could”.
Four weekly scans for the remainder of his pregnancy were done to monitor his growth.
At 37.5 weeks pregnant, Riley had significantly reduced movement and required an emergency caesarean.
Our tiny 3 pound 5 ounce baby was born and immediately intubated with great difficulty and whipped away to neonatal unit. Rileys fragile body was batteling against several heart conditions, hydronephrosis of the kidneys, premature lungs and cancer! Riley underwent many tests in his first few days of life when they discovered a growth, neuroblastoma. Riley battled infections throughout his stay at neonates until he finally got discharged to enjoy some “normal life”. After all, he’s passed his expected life span of a few hours, then a few days, a few weeks, so we were out of there to enjoy as much time as possible for riley would not see his second birthday.
Riley has battled many life threatening illnesses including sepsis, he’s undergone 6 months of chemotherapy, 4 major surgeries (one being 10 hours long ) with added hearing tests, grommets and dental treatment under general anaesthetic. Riley lived with a central line for 2 years, has epilepsy and suffers With respiratory issues leading him to a significant amount of his life hospitalised .
Riley still faces daily battles including reflux, aspiration, glue ear, visually impaired, is tube fed via Gastrostomy, epilepsy and his global development delay including further future surgeries.
Riley takes a concoction of medication daily to keep him comfortable and Control his epilepsy, high blood pressure and reflux.
Riley started nursery and has attended a special needs school for the past 2.5 years but sadly does not thrive or enjoy his time spent at school. After a long time of monitoring Rileys behaviour, progress, mental state and silence, as a family we feel riley will benefit and have a more full filled life if he’s home educated. After all, he’s exceeded his life expectancy of 2 years and so are now on borrowed time? So we wish to live life to it fullest and give riley the best life and chance of succeeding, thriving and opportunity as we possibly can.
Unfortunately a child with such complex needs, both medically and physically comes with a great sacrifice and expense. Since riley will be spending such a substantial amount of time at home with his home education we’d be over the moon for an accessible, safe, educational, sensory filled garden for riley to explore. After all the battles he’s faced in such a short space of time and the battles he faces in his future, our dream garden would give Riley the chance to catch some fresh air, educate, explore and play with his siblings creating lasting memories for us as a family.
Riley is now 6 years old and we would love to give him and his family a garden they deserve.
At just 19 weeks gestation the investigations started to diagnose our little bump and teach us what strength such a tiny human could have. Riley was diagnosed with a bilateral cleft lip and palate, small gestation then wolf hirschhorn syndrome after the lengthy wait of amniocentesis results. Consultants were very clear that Rileys chance of survival would be extremely minimal if he even survived the remainder of the pregnancy and he’d be facing a life time of medical and physical challenges! Termination at 25 weeks was offered and advised but after days of tears, heart ache and exploring all options we could not go through with a termination, “if he’s survived/battled 25 weeks of pregnancy already, how can we take his life and not give him a chance? let’s, let his body decide when it’s no longer strong enough and we’ll have given him every chance we possibly could”.
Four weekly scans for the remainder of his pregnancy were done to monitor his growth.
At 37.5 weeks pregnant, Riley had significantly reduced movement and required an emergency caesarean.
Our tiny 3 pound 5 ounce baby was born and immediately intubated with great difficulty and whipped away to neonatal unit. Rileys fragile body was batteling against several heart conditions, hydronephrosis of the kidneys, premature lungs and cancer! Riley underwent many tests in his first few days of life when they discovered a growth, neuroblastoma. Riley battled infections throughout his stay at neonates until he finally got discharged to enjoy some “normal life”. After all, he’s passed his expected life span of a few hours, then a few days, a few weeks, so we were out of there to enjoy as much time as possible for riley would not see his second birthday.
Riley has battled many life threatening illnesses including sepsis, he’s undergone 6 months of chemotherapy, 4 major surgeries (one being 10 hours long ) with added hearing tests, grommets and dental treatment under general anaesthetic. Riley lived with a central line for 2 years, has epilepsy and suffers With respiratory issues leading him to a significant amount of his life hospitalised .
Riley still faces daily battles including reflux, aspiration, glue ear, visually impaired, is tube fed via Gastrostomy, epilepsy and his global development delay including further future surgeries.
Riley takes a concoction of medication daily to keep him comfortable and Control his epilepsy, high blood pressure and reflux.
Riley started nursery and has attended a special needs school for the past 2.5 years but sadly does not thrive or enjoy his time spent at school. After a long time of monitoring Rileys behaviour, progress, mental state and silence, as a family we feel riley will benefit and have a more full filled life if he’s home educated. After all, he’s exceeded his life expectancy of 2 years and so are now on borrowed time? So we wish to live life to it fullest and give riley the best life and chance of succeeding, thriving and opportunity as we possibly can.
Unfortunately a child with such complex needs, both medically and physically comes with a great sacrifice and expense. Since riley will be spending such a substantial amount of time at home with his home education we’d be over the moon for an accessible, safe, educational, sensory filled garden for riley to explore. After all the battles he’s faced in such a short space of time and the battles he faces in his future, our dream garden would give Riley the chance to catch some fresh air, educate, explore and play with his siblings creating lasting memories for us as a family.
Riley is now 6 years old and we would love to give him and his family a garden they deserve.
Organizer
Becci Louise Laughlin
Organizer
England
