Liwsi’s charm melts hearts: Former student shares daughter's rare condition
A former Coleg Sir Gâr student visited the health and social care team to raise awareness of her daughter’s rare genetic conditions and to deepen students understanding of the importance of compassionate care.
Zoe Brettle and her two-year-old daughter Liwsi, brought a wonderful charm into the classroom that instantly melted the hearts of health and social care students and staff.
With Zoe being a former health and social care student, she found herself 10 years later, back in familiar surroundings where she explained the family’s journey since Liwsi’s diagnosis.
When two-year-old Liwsi was born, she spent her first days in the neonatal intensive care unit needing respiratory and feeding support.
Following genetic testing after finding that Liwsi had 11 pairs of ribs instead of 12, the family’s lives were instantly changed when they were told that Liwsi had not one, but two rare genetic conditions.
Leaving the hospital feeling lost and alone, the family have since been learning how to support her and are receiving support for themselves from the likes of Ty Hafan.
Liwsi has two heart defects known as ASD (atrial septal defect) and PDA (patent ductus arteriosis) and is still unable to feed without a feeding tube.
Zoe explained that Liwsi has started to take a keen interest in food and because they sit together as a family to eat their evening meal, it can become distressing and challenging for family members as Liwsi has to remain on a feeding tube.
To address this problem, the family are fundraising for VitalStim therapy in Napa Centre, London which will cost around £10,000.
The three-week treatment is a non-invasive, external electrical stimulation therapy that promotes natural swallowing.
Zoe explained that the family has also had to fund complex but successful physiotherapy for Liwsi, who had very limited movement before the physiotherapy treatment.
Students were instantly moved by the family’s story and were inspired to donate and produce a poster with a donation code to spread the word about Liwsi’s journey.
Health and social care lecturer Annette Grove, will also be running a half marathon to raise money for Liwsi with staff and students raffling a Christmas hamper.
Despite Liwsi’s conditions, which also include developmental delay, milestone regression, learning difficulties and respiratory challenges, she lit up the room during her visit and in the words of her mum Zoe, “she tackles life with determination, a joyful spirit, and the most radiant smile”.
If students or staff would like to buy a raffle ticket, they are available in room C10 at the Graig campus until lunchtime on Thursday 18 December.
If anyone would like to support Liwsi’s fundraising, the family has shared the links below.
https://www.instagram.com/littlelightbigfight_ourfamily/
https://www.justgiving.com/campaign/liwsiourbravelittlelight