Mum Launches Inspiring Campaign After Her Daughter Was Born With A Rare And Possibly Fatal Genetic Disorder
Katie Scott and her husband Bobby knew of their child's rare genetic disorder before she was even born. When doctors made the diagnosis after a series of tests, they advised the couple to consider terminating the pregnancy. But Kate and Bobby had been trying to conceive for so many years that they ignored the doctors' recommendations and chose to give their baby girl a chance.
Harlow Jean was born in October 2016 with a condition known as Lissencephaly. This disorder meant that her brain did not develop folds and it affected her neural and mental development. The condition has no cure, but depending on the severity, it can be managed with treatments. However, getting the help Harlow needed was quite expensive.
Kate knew they had to find ways to be able to afford medical help. She began by selling t-shirts on Etsy. The concept 'Hope For Harlow' was soon realised.
The mother told Babble that she "believed her daughter deserved a fighting chance." She said they had been "in and out of the hospitals constantly and worrying about seizures and her brain, her GI problems her gastrostomy tube infections and her actual mental state." Despite it all, Kate said she never regretted her decision to keep her child.
As time went on, the Hope for Harlow brand expanded and other items such as jewellery, car seat covers, baby bows and bibs were added to the collection. These products featured beautiful and whimsical messages and inspiring designs.
Her brand continued to grow and the parents were able to afford to get treatments for their little girl. Katie recently launched a special fund where she made shirts in honour of disabled children and half of the proceeds went to their families. She told Babble that she was doing this to offer assistance wherever she could.
I’m just a regular girl who believes there is good in the world if I can help just one person it’s worth it.
Katie was able to do her part in raising awareness for Lissencephaly and said that having so many parents reach out to her and offer so much positivity has been very helpful. She hopes that, by sharing Harlow's story, more parents in similar situations will be inspired.