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Callum's Story My Husband and I have a five-year old son named Callum, who suffers from a rare genetic disorder called Angelman Syndrome. In short, Callum suffers from many debilitating conditions which means he does not walk as yet, has no verbal communication, struggles with simple daily tasks such as feeding, has a severe sleep disorder which means he is awake for several hours a night and most urgently suffers from critical, uncontrollable seizure activity...[more] |
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Graham's Story Graham was born in 1997 after a healthy pregnancy. As most parents do, we counted his fingers and toes and were happy that everything went well and we brought him home with no problems. Soon after, Graham was having what we now know to be drop attacks, a type of seizure where the body seems to lose tone briefly and quickly. He was having upwards of 75 of these types of seizures a day...[more] |
On October 12, 1999 our daughter Kelly was born healthy and was progressing well – a beautiful baby sister for our son Matt who is three years older.
At one year of age a fever sparked and we rushed Kelly to the hospital; this happened on Kelly’s first birthday. It was touch and go for about a week, and then we were told Kelly’s brain was swelling, the doctors told us to prepare for the worst as they did not expected to last the day, we would soon have to decide whether or not to keep her on life support.
Our decision was to trust Kelly into god’s hand and we removed the life support – Kelly survived but we did not have the same child. It is still not clear what happened to her as the fever was never rooted to any specific cause that made her brain swell. We were told that Kelly had severe brain damage and would require total care for the rest of her life. The outlook was grim.
Our family was devastated and our lives changed forever. Our journey to where we are has not been easy. I am happy to say that Kelly is extremely healthy and happy and we look at caring for her as a gift. A gift of acceptance, patience and love – we enjoy her every day. My husband Jim and I are so fortunate to have an extended family that accepts her and loves her as well. Her brother Matt is special in his own right and is developing into a wonderful caring young man, who at fourteen still participates with Kelly in sibling days at The Darling Home for Kids, often helping others with their activities too.
When you have a child with so many challenges, the factor that plays a huge part in your lives is time. We are blessed to have found The Darling Home for Kids – a place where Kelly can go and be with her friends and have sleepovers – something that is just not part of a child with special needs’ normal activities. The caring staff looks after our princess so our family can have time away and a break to refuel from the daily care required to look after a child with special needs. Kelly is non verbal, fed by g-tube and requires total assistance for her daily routine. She has a contagious smile that lights up a room and makes troubles from the day just melt away. The Darling Home for Kids offers us a refuge and peace of mind to know she is looked after during her stay and we are so fortunate to have found it.
My husband and I have a five-year old son named Callum, who suffers from a rare genetic disorder called Angelman Syndrome. In short, Callum suffers from many debilitating conditions which means he does not walk as yet, has no verbal communication, struggles with simple daily tasks such as feeding, has a severe sleep disorder which means he is awake for several hours a night and most urgently suffers from critical, uncontrollable seizure activity.
Unfortunately Callum’s story is not unique and his situation is only one of the many cases out there.
So like many other parents of medically fragile children, Alistair and I struggle with multiple challenges and a schedule of 24/7 care. We worry about every aspect of Callum’s development…every second of the day, 365 days a year.We were fortunate enough to be introduced to The Darling Home for Kids about 18 months ago.The Darling Home for Kids is an amazing place where wonderful children come together and where even more wonderful people care and love our children. It means that for a few days at a time, for a few times a year, we are able to leave Callum in the arms of someone else to regain our strength and find more hope within ourselves, and to ready ourselves for the many challenges that still lie ahead.The families who use the Home are incredibly lucky to have such a support system around them. For without this home, we would be even more tired, more stressed and less able to be loving parents to all of our children.It is often said that ‘it takes a village to raise a child’ and for families of special children this is never more true. What an exceptional village we live in.Thank you for opening your hearts.
Graham was born in 1997 after a healthy pregnancy. As most parents do, we counted his fingers and toes and were happy that everything went well and we brought him home with no problems. Soon after, Graham was having what we now know to be drop attacks, a type of seizure where the body seems to lose tone briefly and quickly. He was having upwards of 75 of these types of seizures a day.
Doctors eventually diagnosed Graham with Lennox-Gastault Seizure Disorder, where the patient has more than one type of seizure. He was also diagnosed with microencephaly, cognitive and physical developmental delays.
Graham does communicate and move in his own special way. Graham likes to bounce and crawl on the floor to get to where he wants; whether it be a toy, window, or our family pet. We have nicknamed him Tigger because of the bouncing.He has been a joy and has changed our lives in ways we would have never expected. My husband and I have been fortunate to have had each other to lean on, but there are not many people we trust or feel capable of leaving with Graham because of all his special needs and the toll it takes on them, especially our parents, who love to help but find they are not physically capable of the demands.This has led Todd and I to a “divide and conquer” lifestyle. If one of us has something to do, we will often switch off so we can get things accomplished. Grocery shopping, trips to Home Depot and small luxuries such as getting our hair cut have to be planned well in advance as we have to make sure Graham’s needs are covered off. Anything that takes more than a couple of hours to do has to be timed and planned around Graham’s schedule.
This is where The Darling Home for Kids comes in. Having a weekend to ourselves is a luxury that we do not take for granted. We know that when he is there, he has been well taken care of, people play with him and do things with him. They take care of him as Todd and I would take care of him, and that is a comfort that you cannot imagine. The Darling Home for Kids lets us recharge our batteries so we are ready to tackle another week and appreciate ourselves, our daughter and especially our son Graham.
