By Vanessa Papas: They say parenting a child with special needs is like playing a sport where no one knows the rules, the goalposts keep changing and there are more referees than there are players. Kasandra van Alphen’s parents know the drill all too well after their eight-year-old daughter was diagnosed with Primary-Immuno-Deficiency – an in-utero gene mutation.
Kasandra, fondly known as Sannie by her friends and family, is a bright and energetic little girl from Rivonia, Johannesburg, who has a sunny personality and loves life. Sadly, because she doesn’t have a developed immune system she is constantly in hospital, leaving little time to experience the same things other children her age do. In addition to Immune Deficiency, she also has PID Selective IgA Deficiency, Bronchieactasis, Leaking Heart Valve, various allergies, eczema related skin issue, as well as stomach and bladder problems.
While most of us can fight off nasty germs and bugs, Sannie can’t, invariably leading to her developing life-threatening infections that won’t clear up and are unusually severe. She is currently receiving Polygam treatment every four weeks. The treatment helps her body ward off viruses, especially through the winter months and change of seasons, but it is no way a cure for her condition and results are only temporary and bring on very harsh side-effects.
Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. Polygam treatment is made from healthy human blood that has a high level of antibodies, which help fight infections. It is also used to increase the blood count needed for PI sufferers to stop bleeding and form blood clots.
“We were forced on to Polygam, with no alternative choice,” says her mom, Michelle. “Her reactions come and go from infusion to infusion. Side effects include everything from rashes, fevers, blood pressure spikes, and heart rate drops, to vomiting, headaches and severe fatigue. Sannie’s length between infusions has shortened from six weeks, to four weeks. We always know it is Polygam time when Sannie actually tells us that she needs ‘her soldiers’. It is terrible watching her health take a complete dip. It’s also been an uphill battle to get our medical aid to pay for Sannie’s polygam treatment.”
In addition to Sannie’s Polygam treatment, hospital admissions, vaccinations, doctor visits, anaesthetist bills, scopes and scans which she needs regularly, as well as her cardiologist check-ups, her family are trying to raise money to go to the Immune Deficiency Federation International Conference, set to be held in Dallas Texas, where they will receive a host of information, meet some Immunologists and possibly find Sammy a cure or safer treatment which will work better for her. Donations will also be used to settle past accounts and allow Sannie to get the best treatments going forward.
“As a parent you do not want to accept this life for your child. A life of hospitals, doctors, needles and constant testing. Her diagnosis does not only affect her individually, but it affects her younger sister as well. To find the balance in one’s family life, when burdened with medical issues, is really tough. But we are incredibly blessed with the support structure of family and friends, without them, I often wonder how well we would have coped up until now,” says Michelle.
Currently Sannie has a daily prophylactic antibiotic to give her an extra barrier against the floating viruses. Once a month she receives her IG Treatment Polygam (soldiers). Every six months she must have a Broncoscopy (Lung Scope and Flush out) and Cardio check-ups. Our biggest challenges have been battling the medical aids, battling a Rare Disease which is still being explored. It is also scary when they have to perform procedures which scare her tremendously, and as a parent you have to suck it up and be brave for them.”
Pay It Forward
Sannie’s parents have opened up a Back a Buddy campaign readers can donate to. They are also involved with Arms of Mercy who will be selling beautiful bracelets specifically designed to help raise funds for Sannie. For more information log onto Sannie’s Soldiers, or e-mail [email protected]