What is BPAN and what does it mean for people affected by it? Take a look at our overview and listing of resources.
A key part of our mission is to help further the research that is being done on BPAN.
Read about other family's stories, learn about conferences, and join associations to get the support you need.
Follow along with us on Eva's journey, progress and adventures.
EVA'S JOURNEY & OUR MISSION
Our Eva, our Eva “monkey”, our “mush”, our “magoo”, is our sweet baby girl who we have the privilege of calling our daughter. Now four, she shares our home with her fiery, outspoken, mini-mom sister Ella, now nine, soon to be 16 (#1) and Emma (#2) our thoughtful, highly-focused, resident artist, recently eight.
All would agree, her smile, dimples and her “gorgeous” eyebrows, are but part of her allure. With a flirtatious toothy grin, scrunched nose, and tilt of her head, most would find themselves completely powerless to her charms. Her super powers, Emma says are her “cuteness” and her “adorableness” and few would disagree. We would have to add, that since birth, she has had the innate ability to draw people to her, without ever uttering a word. Her dark brown eyes have a way of speaking to your heart. As said by a close family friend, even in infancy, “that child is something…she is something special”. We choose to believe that the spirit of LOVE resides within her so strongly, that words are unnecessary for her to connect to others. This has proven to be a great asset, since she has yet to acquire any expressive language. What she lacks in speech, she makes up for in pure personality. Stubborn and strong-willed some have called her, sweet, endearing, loveable and irresistible all have continue to call her.
a Rare Disease Day
Wear our BPAN temporary tattoo and share to social media
Take a selfie wearing a BPAN Warriors temporary tattoo. Let us know that you care! Please share, copy, forward, etc. Please tag #bpanwarriors, #rarediseases, #wrdd2018, #teamnbia
Let us be the community that supports Eva and all individuals and families affected by Neurodegeneration with Brain Iron Accumulation (NBIA) BPAN and other rare conditions. With Research, Awareness, Resources and a wealth of shared Experiences, we can collectively, bring Rare Diseases out of the shadows, into the sunlight. BPAN is more than a clinical name; BPAN has a face and a heart – it has the face and the heart of our daughter Eva Magoo.
We are asking you to please, publicly show your support online via Social Media (Facebook, Twitter, Instagram, etc.), as we believe this will be the quickest way to connect with others and raise awareness and funding for ongoing research.
Eva loves her family, mother Sarah, father Robert (some would say, she is a Daddy’s girl and reverts to “bad behavior” in his presence) and her adoring two big sisters. Her favorite toy for over 2-1/2 years was Goofballz, Max the Monkey, affectionately called Monkey Ball (at one time we had close to 20 – we are now down to 6) and now it appears that she has a major love affair with Mickey Mouse (and Minnie will do in a Pinch). Like many young children, she loves music, and has been known to “cut a rug” and shake her tail feathers. The Chisholm Clan has been known to host quite the disco, dance party on any given morning, day or night. Eva is of course a VIP.
Eva also has an affinity for the water and enjoys kicking around in the pool, barreling into rough ocean waves and splashing about in the tub. Since learning to walk at 2-1/2 years old, she enjoys endless walks, bike rides with Mom and Day or taking a leisurely stroll in her BOB, especially when the Florida weather provides some respite from the heat with cooler temperatures and gentle breezes. She also enjoys long car rides with her family (the windier the road the greater the enjoyment), jumping on a trampoline, lazing on a swing, playing ring-around-the-rosy or a never-ending games of “catch” with her sisters (or for that matter, anyone who will retrieve her errant balls) and if that fails to amuse her, tickle time on Mommy and Daddy’s bed is sure to bring forth peals of high pitched laughter.
Most of all Eva LOVES to be engaged by her family and her INCREDIBLE Team of dedicated and loving therapists. This is a blessing, since she receives over 25 hours of one-to-one therapy every week (a combination of ABA, Speech, Occupational Therapy and Physical Therapy). Her Team understands just how precious our Eva is to us and they work tirelessly to maximize her capabilities, challenge and strengthen her abilities and ensure her quality of life. Although her progress has been at times achingly slow and has always been measured using a different yard stick, we like to think that she is where she is at today, healthy and happy, because of the community of caring and supportive therapists who too, have fallen under her spell.
We joke with the girls, that Eva is really special, we just never imagined how special – Eva is literally one in a million. That is our Eva. She is special. She has brought amazing people into our life.
It is in this spirit of LOVE, that we continue each day to honor that connection, that we choose to love and live with hope not just for Eva’s health and happiness, we live in each day recognizing that save for the LOVE of family, friends and community, our story could never be written. Eva has brought people together, from all walks of life, who on a daily basis, provide us the much needed guidance and encouragement to always move forward with gratitude and share our experience, strength and hope.
EVA MAGOO, WE WILL ALWAYS LOVE YOU.