WILLOW VERONICA HOWARD

Condolences & Memories (5 entries)

• I got my first tattoo in August 2023, 6 months before my daughter Willow passed away. It look me years to finally get a tattoo because I always wanted it to have a deep meaning to me. The design has geometric shapes to mimic the deathly hallows in honor my deceased uncle who enjoyed the Harry Potter stories alongside me when I was a child. In the position of the rare & powerful elder wand (also referred to as “wand of destiny” or “death stick”) was a Willow branch with a mixture of solid leaves and dotted outlines of leaves. The dotted outline of missing leaves was meant to symbolize my daughters missing NGLY-1 gene. The myth is that the one who holds all three deathly hallows becomes the vanquisher of death. Death in childhood felt unavoidable and highly likely at a time when there was no cure for NGLY-1 Deficiency, so I got the tattoo as a reminder to not lose hope. I was standing in our kitchen mourning her death on Rare Disease Day, February 29, 2024. The first NGLY1 patient had been dosed with a developed gene therapy, and yet she died only days beforehand. Mixed emotions swirled inside me, I looked down at my tattoo and a profound realization struck me. It had eight solid leaves… She was eight years old when she passed away. The universe has a way of showing us signs that things are meant to be. Suddenly I was given a sign that eight years with Willow was what we were always destined to be allotted. The hope the tattoo was intended to inspire in me was to carry on for other children, but not my daughter. I feel this sign was meant to help me accept that she was never destined to recieve the cure. To allow me to come to peace with her legacy being a part of pioneering an understanding of this terrible disease and shaping a deep understanding of the importance of our health as well the fragility of our time on earth in those who loved her. Brevity isn’t always avoidable, and the length of one’s life isn’t a measure of its success. It’s just what was always destined to be. When I count up both the solid and the dotted outlined leaves, my tattoo has fifteen leaves total… The age of our son when he lost his sister. As we move into life without Willow present, we feel grateful to have each other. He is surrounded by support and love from our family and friends, as are we. I continue to have hope for all of us, and anticipate a bright future ahead as we take steps away from this dark moment in time. Thank you Willow, for teaching me to appreciate even the smallest moments in life. You are loved by us and your presence will be missed for as long as we remain on this earth apart from you. - Posted by: Anna Howard (Mother) on: Mar 02, 2024

• I will truly miss Willow. I loved visiting her and going for walks to Tims. It was a fun time and she will be missed dearly, R.I.P Baby Willow - Posted by: Angel (Cousib) on: Mar 02, 2024

• Heartbreaking to see the loss of someone so young. We can't imagine the sorrow you are all feeling. Please know others are thinking of you even though we've never met. Take comfort from your precious memories and the time you had together. May your dear daughter, relative, and friend, Willow, rest in peace. - Posted by: Tim and Joan Connell (None) on: Mar 02, 2024

• We are so sorry for your loss of such a beautiful little girl, just know that she touched the hearts of people she never met sincere condolences. - Posted by: Glen and Janet gray (Through hailey ) on: Mar 02, 2024

• My deepest sympathies to your family. May you find peace & love with your family around you.❤️ - Posted by: Veronica Black (Friend) on: Mar 02, 2024