Hope

Our dreams, our futures and our faith is summed up in that one little word above...HOPE. Today is the first day on a clean slate of a brand new year. What 2009 will bring forth for us is still unknown, nevertheless, our goals and dreams for our future, for our children's future, stand before us as bright beacons of hope.

As parents we desire for our children to have the best in life. As we gaze into their tiny newborn faces we wonder what the future holds for them. We plan for when they will go to college. We imagine their wedding day. We delight in the possibility of grandchildren. We aspire to be all for them so one day they can be all they need to be to make an impact in their world.

Millions of parents whose children suffer from debilitating, incurable and devastating diseases have the same hopes and dreams for the future of their children. Yet lurking beneath those ambitions is a disease wreaking havoc in their child's body. In some cases, reality takes over to extinguish their hope as the disease wins the battle and takes the life of their child. While in others hopes are dimmed for awhile then suddenly the fog lifts and the beacon shines bright again as better treatments are made, or cures are discovered.

In our family we have two children who have life threatening immune system related diseases. Brandon with his IgA nephropathy needs to take a drug used to control blood pressure. Keeping proteins from being pushed into his kidneys that would damage and scar their sensitive tissue. This drug has been an advance in his disease that has offered us hope for his future. One without dialysis and eventual kidney transplant. Though we are thankful for a way to control this disease we continue to hope for a cure.

Every day with Adeline is a gift from God. As you know she suffers from severe anaphylactic allergies and allergic asthma. Each day for her is a battle. If she misses one dose of her medicine the asthma advances. If she has ingested some hidden allergen her body, thinking it is helping her, catapults her towards death. The only safety net is her epi-pen.

This past year with her has been one of the hardest yet as we have struggled to keep her disease under control. It has literally been a roller coaster ride of ups and downs. Facing the possibility of having to put her onto a daily regimen of steroids was alarming. Knowing that the best medicine on the market here was also one that could cause an anaphylactic reaction was discouraging. Thankfully, we were able to import the one medicine from the States that is safe for her. Already we have seen a dramatic improvement in her daily peak flow readings.

Like Brandon, her disease remains uncured. Each time her numbers drop (or Brandons nephropathy acts up) the fog descends. Leaving me to wonder, will this medicine eventually prove ineffective? What will we do then?

Today the fog has lifted some as a beacon of hope shines brighter at the announcement of a possible anti-allergy vaccine. Though it may not be as effective for Adeline, because she is 8 years into her asthma and allergies, it still offers a glimmer of hope for her future to be asthma and allergy free...or at least diminish the results of her over active immune system.