|Luke with Boots|
I first met Luke a year ago when I was in South Africa giving some talks and workshops. We stayed with Luke's family in St Lucia and spent a few wonderful days with them all. Luke and his brother captured our hearts and soon Nick became "uncle Nick". Luke's family have been through some tough times, but they are all incredibly resiliant and courageous. Let me tell you a little about Luke:
Luke is five-and-a-half years old and attends a pre-school in Durban in a class of sixteen. The school has been wonderful with food security and sticking to a routine - they take time to explain changes to Luke and have made it their policy to always tell the children that if something (an outing or activity) does not happen because of rain etc, they will do something else. This has meant that Luke is extremely happy and secure. He does speech therapy, occupational therapy and horse-riding twice a week.
His mother, Janet, says, "He has just started to become more aware of food and tell me he is hungry more often, but I can still keep to our time frames for food. He has an incredibly memory about everything!! You dare not say something about what you are going to do, buy, or say, as he will make certain that you do! He has a wonderful sense of humour, he idolizes Matthew (his older brother) and always says he wants to be just like him."
|Matthew with Boots|
Let me tell you a little now about Matthew... in Janet's words:
"Brian and I are parents to two wonderful boys, Matthew (13) and Luke (5). Throughout my pregnancy with Luke we had prayed for a normal birth and normal child, no issues. We did not ask for an "Einstein" or a "Sports Star" just a normal baby. You may ask why the focus on this - well Matthew was born with a congenital heart defect and honestly, we had been through the mill with him. At the time of Luke's birth, Matthew had already had 5 open-heart surgeries, we spent weeks outside of ICUs and Matthew has consequential health and learning issues.
"Dealing with two boys with medical as well as educational issues has been difficult to say the least, but we press forward. Matthew is an amazing older brother and has immense empathy and understanding of Luke, perhaps because of his own health issues. He is wonderful with Luke, a real friend and brother to him.
"We are constantly questioning and researching how we can give our boys what they need in the future. Of huge concern is the lack of PWS-focused residentail care for our children in South Africa, because, let's face it, we will not be around forever and we already know how difficult times can be when we do not have the support we sometimes need. Brian and I are looking at facilities (and if necessary we will develop one ourselves) and are trusting that we will be able to do something before Luke requires it.
"One thing we are sure of is that we would not be where we are with our boys today without our faith and trust in God to see us through. Even despite this, at times it has been difficult."
Matthew still faces more surgery and has recently been through another battery of tests and is on oxygen. Personally, I have taken great strength from this wonderful family and it was such a pleasure and joy to get to know them during our short stay in South Africa. Janet has allowed me to tell you a little of their story...