We don’t normally write about personal stories like this, but this is an exception. And we are asking for your help.
Mia Murchison is a dear little 3 year old who loves birthdays, horses, and cupcakes. But just a few weeks ago we had some very sad news about Mia.
Last August Mia had a seizure. Mia was diagnosed with epilepsy, but the seizures continued and there were further developmental delays. After multiple rounds of testing and multiple doctors and hospital visits, Mia was diagnosed with Late Infantile NCL (Neuronal Ceroid Lipofuscinosis). This rare genetic condition is also known as Batten disease. There is no known cure for Batten disease.
This devastating diagnosis of Batten disease is the worst possible news for Mia’s parents, Peta and Hamish.
Mia is becoming increasing unsteady on her feet and is gradually losing her developmental skills such as walking, standing, playing, and speech. She has become a restless sleeper, waking frequently through the night, and she can become easily distressed.
As the disease progresses she will be less able, and totally dependent on her parents and carers. By the time she is 4-5 years she will have significantly impaired movement, along with major personality changes, speech and cognitive impairment, and general developmental regression. She will slowly lose her sight. By the age of 6 years, she will be dependent on her family and carers for all her daily needs. She may eventually need breathing assistance as her body stops functioning. Tragically, death is inevitable and usually occurs between the ages of 6 and 12 years.
How can you help?
The Singapore community is rallying together to fundraise for Mia and her family. Please join us for a very special fundraising night for Mia. A Summer Night for Mia will be held on Friday 5th July at The Singapore Polo Club, tickets are $175 and we are asking friends, workmates, and strangers to buy tickets or donate prizes for the night to help with the fundraising.
There is also a wine drive running by drink, with ALL the profits from the sale of the wine going directly to Mia’s care. drink is providing superb NZ wines at a heavily discounted price. Top quality NZ whites and reds from a boutique winery INVIVO delivered to your door, that not only taste great, but by buying a case or 2, you will be making a difference for little Mia. For more information on the wine drive email laurie@drink.com.
Alternatively, you can donate directly to the Mia Johannah Trust. For more information on the event please email summernightformia@gmail.com.
To read more about Mia’s Story, see www.miajohannah.com
We thank you in advance for your support of Mia and her family, and we know together we can help ease the journey of Batten disease for the Murchison family.