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]

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]

Teigan’s Story As the mother of a chronically ill and medically fragile child I know first hand the desperate need for a Home like The Darling Home for Kids. It was August 3rd 1992 when my husband David and I were blessed with our second child, a beautiful 9lb baby girl. What we didn’t know was that in a few short hours our life would begin a journey we never could have imagined...[more]

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.

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'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.

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.

Teigan’s Story

As the mother of a chronically ill and medically fragile child I know first hand the desperate need for a Home like The Darling Home for Kids. It was August 3rd 1992 when my husband David and I were blessed with our second child, a beautiful 9lb baby girl. What we didn’t know was that in a few short hours our life would begin a journey we never could have imagined.

Shortly after her birth our daughter began having seizures. Tests soon revealed that she had gone without oxygen for a period of time, and the brain damage was extensive. Numbed by the news, David and I could only watch as tubes and machines were hooked up to all parts of her tiny body and doctors and nurses work tirelessly to try and stabilize her. She was now having 100 seizures a day and each night we could only pray that she would still be with us in the morning. Thankfully, our prayers were answered and after several months in the hospital we were finally bringing our baby girl home.

Our daughter is now 17 years old. She is non-verbal, non-mobile, cerebrally blind, and of course epileptic. Her cognitive level is approximately 8 months –1 year. She is diapered and requires someone to bath her, dress her, and feed her daily. She takes 12 pills that are routinely scheduled throughout each day and each night she is administered more medication through a gastrointestinal tube in her stomach. Our daughters name is Teigan, an Irish Gaelic name meaning beautiful, and she is very beautiful in every sense of the word.

Over the past twelve years Teigan has undergone many surgeries, some with unexpected complications resulting in prolonged hospital stays. She has had rare reactions to medication that have again almost cost her her life. She has suffered severe break through seizures meaning frantic calls for an ambulance, sometimes in the middle of the night. For the first 11 years Teigan suffered with gastrointestinal problems that caused her incredible pain and discomfort. She would scream and cry for long periods of time throughout the day and night. Her visual impairment, combined with her neurological impairment, means that she rarely sleeps through the night, often waking at 2 or 3 in the morning, and there is no going back to sleep for her.

David and I feel very blessed and fortunate to have Teigan in our life. Her beautiful smile and infectious little giggle have brought endless amounts of joy to us. But I would not be completely honest if I didn’t tell you that there have been times over the past 12 years that caring for Teigan has been a little overwhelming, both emotionally and physically, especially since we have two other children who also need our attention. Government cutbacks mean that help within the family home is limited. For families like mine, The Darling Home for Kids is a necessity not an option. It provides the much needed break from the endless routine of caring for a chronically ill child.