Stand By Me
Living With ARPKD/CHF
As a mother of an ARPKD/CHF child, I feel as if I’ve been standing by you and with you for many years now. It’s always been comforting to know that other parents like me are living through the day-to-day trials and uncertainties of having a child with ARPKD/CHF. For this reason I’ve never felt completely lost on this journey and that alone has given me the inspiration, knowledge and strength I have needed these past 9 ½ years since my daughter Claire was born and was not expected to survive infancy.
This fall we face the inevitable challenge of seeing Claire through her first kidney transplant. The past year has been difficult not only with the realization of her kidney failure, but in dealing with so many of the “unknowns” of this disease and the challenges of collaborating with the medical community to ensure the best possible care specific for her. I definitely feel like I’ve turned a corner, and as I ‘m leaving “kidney disease world” I know I’m entering a new realm of unfamiliar territory known as “kidney transplant world.” Scary? You bet. We’ve faced some difficult heart-wrenching decisions and ended up changing medical teams/hospitals 3 months before transplant. But again, I wasn’t alone. Thanks to the ARPKD/CHF Alliance I found the guidance and support of an organization that cares and is committed to our children, and parents who’ve not only been there but are more than willing to share their experiences and advice and be truly supportive. This is all just one more reason why I so strongly believe in the value of this organization and importance of our ongoing involvement as parents and family members of ARPKD/CHF children to continue fighting a concerted attack on this disease. We really have made such a difference and can continue to do so. There’s so much more hope ahead.
There’s nothing like the experience, faith and persistence of a parent with a child who has a physical, emotional or intellectual battle to fight. If there’s anything at all I’ve learned as an ARPKD/CHF parent, it’s the importance of being my child’s advocate even in the face of uncertain and intimating circumstances. And the Alliance made me a better advocate by fulfilling the mission they proclaim “to educate, advocate, support and advance research”. This disease is so varied and no two children are affected in exactly the same way. Thanks to much of the work of the Alliance we now understand so much more about ARPKD/CHF, more infants are surviving and more children are living to receive the gift of a new healthy kidney. But there’s still so much more to learn about the disease progression, treatments, transplant procedures, immunosuppressive drug therapies, social/emotional concerns for our children, and congenital hepatic fibrosis and its varied effects long-term. Because of this, we need to continue to stand together to make the Alliance stronger, bigger and better so we can forever change the future for our children and all ARPKD/CHF babies to come. ~ Linda Bevec
Claire is scheduled for transplant December 30, 2010.
