Please help us reach our goal of raising $1,000 for the Ninjas Fighting Lymphedema Foundation. So many people have expressed compassion for our family while we've been dealing with this new chapter in our lives - now is the time to put your wallet where your heart has already been.
Ninjas Fighting Lymphedema Foundation held a 5k in St. Louis over Ally's birthday weekend. They did not meet their fundraising goal so they opened a "virtual 5k" event - register for the event and complete the 5k wherever and whenever you can. Join my family to complete the virtual 5k Nov 16th at 10 am (location TBD - Rockville/Cold Spring area). If you can't join us and/or a 5k is just too much for you, please consider donating. Any donation helps get us to our $1,000 goal.
Ninjas Fighting Lymphedema Foundation is one of the larger non-profits I found who's focus is lymphedema. Their main goal is to advocate for this disease within the medical community; this means earlier diagnosis, better education and resources for daily care regimens and battling excessive medical costs.
Ally was diagnosed with lymphedema this spring at 5 years old. She was born with this disease which means it took us 5 years to get a diagnosis. We spent our entire summer commuting to the Twin Cities for various medical appointments. Ally underwent a 6 hour PET scan with nuclear medicine to determine what, if any, of her lymphatic system was functional. We've been seeing a physical therapist twice a week. Once things settle into a normal routine, Ally will see physical therapy at least monthly for the rest of her life.
Ally has become a great advocate for herself! She knows even the smallest cut or scrape on her feet, ankles or legs MUST get cleaned and antibiotic ointment applied immediately. She also wears custom compression garments day and night. In addition to being insanely expensive, they are difficult to get on and off and must be washed every time they are worn (think of a freshly washed pair of jeans; they are snug when you first put them on and slowly loosen throughout the day).
Exercise and activity are incredibly important as your muscles push lymph fluid. Ally is a typical active kid so this aspect doesn’t present too much of a challenge…yet! Finding time to complete MLD (manual lymph drainage) has been a challenge. MLD is designed to stimulate Ally’s lymph nodes in hopes of getting the non-functional nodes to function a bit and the functional nodes to work a little harder. MLD also involves manually pushing lymph fluid up and out of her legs to be processed by other nodes within her body. Getting a 6-year-old to WANT to lay down and be relatively stationary for 30-45 min daily is NOT an easy feat!
As a child, or even an adult for that matter, looking different is not always easy. Other children have unintentionally hurt her self-esteem, telling her she couldn’t play with them because she was hurt. Kids and adults alike have asked what happened to her leg (less often now that we have custom compression which looks less medical and more like tall socks). Our family just took some long overdue family portraits. The night before the photo shoot, Ally looked at me sadly and said her lymphedema was going to ruin the pictures.
Lymphedema is not life threatening as long as you care for your body. It is, however, life altering. Not just for the person suffering from this disease, but their support system as well. Ally and I are so much more than a mother and daughter. She is the patient and I am her primary caregiver. She is a lympie champion and I am her biggest supporter and cheerleader.