「Happy birthday!」When even breathing seems like a luxury, for patients with rare diseases living under the shadow of illness, every birthday represents another year of life and is of special significance. Lifewire, Hong Kong's first online crowdfunding platform dedicated to children with rare diseases, held a birthday party for nine children with birthdays between January and June who are fighting against rare diseases on Saturday with a group of volunteers. At the same time, we would like to express our gratitude to a group of mothers for their sleepless care over the past year.
For a group of patients who rely on wheelchairs to get around, eating a barbecue meal may be out of reach, and the steps in front of the store even keep them out. Therefore Lifewire and a group of caring people have come together sponsor the venue, BBQ rice bowl set, birthday cake, food, etc., About 60 patients with rare diseases and their families were able to experience the taste of live barbecue and have fun together.
One family tried barbecue for the first time and said it was fun and new. Wong Wai Lung, who suffers from the rare disease ATAD3A, served as the guest MC and performed stand-up comedy
Among them, the birthday girl Josy Chow, who suffers from spinal muscular atrophy and can move only two fingers freely, said that with Lifewire's support for physical therapy and speech therapy, she has received more treatment recently and her physical condition has improved significantly. For example, Eating more than before, drinking 100ml of water and soup, and tasting desserts made by the Lifewire team in one day, doing these things that were difficult to do before, is the best birthday gift.
Ho Junjie, Alexander, who suffers from "succinate semialdehyde dehydrogenase deficiency" SSADH and often twitches, his family specially prepared small gifts for the birthday celebrants and wished each other well. 林博言, a child with "Rubinstein's Taby syndrome" and a January birthday celebrant, loves eating birthday cake the most. After just a few bites, he smiles so much that his teeth are visible but not his eyes.
Although Bux Hei Yau Annie, who suffers from developmental hip dysplasia, has her birthday in the second half of the year, she was as happy as if it were her birthday when she put on her favorite pink crown arranged by Lifewire.
Many families are grateful. Every activity brings new experiences, feels fresh and interesting, and they are grateful to meet everyone.
The volunteers presented red envelopes and hand-crocheted flowers to the birthday celebrants, and carnations to the mothers who had worked so hard to take care of the children. The scene was heartwarming. We would also like to thank the restaurant "一人燒肉屋" for sponsoring the venue and drinks, Sai Kung Cafe & Bakery for the birthday cakes, Soma Kitchen fpr sponsorering the party food, so that it brings together a group of patients with rare diseases to spend precious and meaningful time together.
