Guest Blogger: Rayna Arthur
When I had my first child, Aaliyah, it was the greatest joy and love I’ve ever known. At almost 3 months old, I noticed something
different about her. Naturally, I started researching and looking at medical journals for an answer. I brought my concerns to her
pediatrician and was told not to “Google,” as all first-time parents tend to overreact when they notice something that seems different
about their child.
This wasn’t good enough for me, so I pressed on and asked her to investigate.
A few weeks later my pediatrician called me, apologizing. Aaliyah was diagnosed with Systemic Macrocytosis (SM) – a rare and
incurable disease. SM is a disorder that results in an excessive number of mast cells in your body, which build up in your skin, bones,
or small intestines. After her diagnosis, I went to every specialist and provider I could find in South Florida that may have insight
regarding this disease. Unfortunately, despite our best efforts, there was still no answer.
It was so difficult to watch Aaliyah’s life become one that no child should have to endure – simply because of the way she looked. We
were kicked out of play areas, asked to leave water parks, parents pulled their kids away from her in public, and we were even
escorted off a plane.
When all was feeling hopeless, we miraculously stumbled upon a specialist in Washington DC, who was able to help us find some
answers. Life finally began to level itself out for Aaliyah, and our family began to feel hopeful and wanted to share that hope with
Because of our personal experience, our family has been passionate about raising awareness and research for rare diseases –
especially those affecting children. We got involved with the Children’s Miracle Network (CMN), a nonprofit organization that raises
funds for children’s hospitals, medical research, and community awareness of children’s health issues. We were able to take part in
‘Dance Marathon’, a fundraising event for the CMN. All funds were used to pay providers or buy equipment to be able treat children’s
The Children’s Miracle Network ignited my passion to give back because I felt I was able to give hope to families who had felt as
hopeless as we did. Through our time volunteering, we have been able to meet families who have faced unimaginable hardships,
and together find hope and joy. The g