The young parents were thrilled with their firstborn son, a healthy little baby, yet before he reached his first birthday it became obvious that something was not right. Alexei was diagnosed with Hurler Syndrome, a genetic disorder which is the severest type of mucopolysaccharidosis and affects 1 in a 100,000 newborns.
This rare condition can only be inherited when both parents, neither of whom show any signs of the disease, carry the defective gene.
Alexei is now three years old. His parents obviously love him very much and very touchingly describe what their son likes doing. At home they call him The Boss because he rules the roost. Alexei loves splashing about in the bath where he plays with sponges and balls. After bath time he likes being wrapped up in a large towel and looking at himself in the mirror.
Alexei is a stickler for order. He is the self-appointed door closer in the house and not a single door remains open when he is on duty. All the animals, from the chickens to the cats, must stay outside and if they come in he shoos them back out again. If he sees the cat curled up asleep on the bench in the garden or on someone's lap, Alexei makes sure he is woken from his slumbers and put back into his proper place which is on the ground. No prizes for guessing who is The Boss in the sandpit. Alexei decides which child plays with which toy and supervises everyone's playtime.
Not surprisingly, Alexei is afraid of hospitals and doctors. When his parents take him to the doctor or dentist he starts whimpering. As soon as the appointment is over he rushes to his pushchair as if to say, "Come on Mummy, let's get home!"
Alexei very much wants to be independent and insists on washing himself, particularly his ears. He loves drawing and riding around in his pushchair which he never wanders far from when away from home. This toddler is a very active little boy who likes the company of other children and readily shows affection.
Inevitably, his activeness makes him tiring to look after all the time. Alexei's needs are many and his parents get exhausted. They asked the Belarusian Children's Hospice if Alexei could be signed up for its respite care programme which allows parents to leave their child for periods ranging from several days to two weeks at BCH under the 24/7 care of a nurse. BCH has also sent a nurse to Alexei's home to teach his mother how to look after her son's special needs. The family make use of BCH's care worker who comes to baby sit while Alexei's mother goes out.
This family finds the respite care programme invaluable. It has given them back some time for themselves and the possibility to occasionally rest from their intensive regime of caring for their little boy. Alexei gets excited when he is brought to BCH for a 'little holiday'. He knows the nurses and they, too, look forward to his arrival each time.