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Finding Our Tribe

Reposted from The Choice Life

About The Campbell Family

We are the Campbells 3 of our 5 kids suffer from a rare genetic neurological terminal illness called MLD.LIKE & Follow May, Tori & Ike as they fight MLD.

http://www.thechoicelife.org/finding-our-tribe/

Emma was aghast when we entered the conference. She hadn’t realized that there were so many other families who were struggling with MLD. Feeling isolated and that no one really understands your situation is one of the unfortunate consequences of living with an extremely rare disease. We schlepped the whole family out to Philly for this very reason. We wanted to connect to other families that knew what we know. People who have been traversing the same path we tread. The MLD family conference provided the venue and opportunity for us to share knowledge, compare stories, and listen to the new research being done in the field.

Waiting for a butterfly release to honor those with MLD who passed away the previous year.

Most of the familes at the conference were struggling with the infantile form of MLD. It is the most common manifestation of this horrible disease, and it was heartbreaking to see the childrens’ bodies ravaged by the disease, but I couldn’t take my eyes off of them. There were so many little reminders of Tori. The ways that MLD affects the nervous system are peculiar and endearing. The way the hands are clasped and held, the way the eyes gaze, the angle the head is held. Memories of Tori flooded the entire weekend. I ached to hold my sweet Tori again. Seeing all of these precious children, so helpless and dependent on their families for every need, intensified the longing for my angel daughter.

These people get it, the conference room at time had some of the kids who would laugh or cry, and no one batted an eye. All of the parents knew what it was like. No one was uncomfortable when a mother would administer liquid nutrition through a feeding tube. Everyone understood. We had found our tribe.

Eli and Ike found fast friends in boys who had also lost a sister to MLD.

Madelena doted on the sweet children who were confined to their wheelchairs. She helped them float in the pool and swooned over their adorable faces. Emma ran around the hotel with the other teenagers who knew exactly what it was like to have terminally ill, high need siblings. The boys had a blast in the respite room provided by the MLD Foundation. Most importantly for Aaron and I, we were able to talk to people about our situation, and no explanation was required. It was therapeutic, to be able to share the nitty gritty details and not be afraid of scaring someone, to be able to talk freely, knowing that the other families understood. We were able to discuss things that we had never shared before. We felt safe and protected. This is what community is all about–Understanding.

Madelena just wanted to connect with the children.

Emma spoke on a panel about what it is like to live with the disease, and was able to develop relationships with other teenaged girls who had a sibling with the disease, and had lost a sibling to MLD. I could see this understanding sink into Emma. For her to realize that she is not alone, and that others have experienced similar joy and pain and heartbreak. This will go a long way to combat her feelings of isolation. Madelena was able to see how well she is doing, and feel the love of so many families who understood her struggle, and loved her for it.

The conference helped us understand the disease better, and the medical researchers and clinicians and pharmeceutical reps who were describing their research shed so much light onto a murky topic. Their insights were invaluable and I left the conference feeling stronger, armed with information that helps me to brave whatever the future holds in store, because we are not alone. We are doing this together.