Twelve-year-old Michaela from Buncrana has some incredibly complex medical needs. She has Ehlers Danlos Syndrome and can suffer with up to 15 dislocations a day. Pain is a major part of her life. But she has hope and strength, and a dream to meet other children like herself.
The schoolgirl wants to connect all local families who are dealing with rare and complex medical needs to talk about their life challenges and to share support.
“She is a very brave and inspirational little lady!” Michaela’s mother Emma Lawrence told Donegal Daily.
Michaela and her sister Rosie (9) both have EDS, which is an inherited connective tissue disorder that is the result of a defective collagen gene.
People with EDS may have ‘ragdoll-like’ joints which are profoundly hypermobile. Michaela could have multiple dislocations a day of her shoulders, wrists, thumbs, knees and hips. Rosie, who also has autism, is currently suffering from a partially dislocated shoulder and hypertrophic scarring.
EDS causes hyperextensible skin, which means it is quite stretchy which leads to skin tearing and scarring.
Michaela is now a wheelchair user and has limited use of her arms. She also has epilepsy and an autonomic nerve disorder. Through this and all her pain management, her mum said she is a very brave and inspirational little lady.
Emma said: “Michaela, when she found out there was no cure for her condition, just management, and that she wasn’t a suitable candidate for corrective surgeries, sat with me one day in the car and said, “you know what Mum I don’t need to change my life I just need to change how I look at it”.”
“I’d love to meet other kids who are like me,” Michaela told her mother, and so ‘Hope Builds Strength’ was born.
This weekend will see the launch of the community support group for children and families with genetic disorders or complex medical needs.
“I think there is a high level of need for groups like this nationally. It can be very hard to find a group locally that you can join. A lot of the groups tend to be online and that’s great for the parents but if your child is not old enough to use social media they miss out,” Emma said.
The group will give parents the chance to share techniques, advice and talk about any difficulties or stresses they face. Emma said she expects that hospital waiting lists and a lack of specific resources may be common topics discussed at the meetings.
It was important to note that siblings are welcome too, as Michaela sought include her younger sister Patreece (11) and invite all brothers and sisters to the group.
Emma said, “I think for kids like my middle child Patreece, it’s important that they know that although they may be healthy they are as important as the child that is ill.
“Sometimes the siblings of ill children can feel like they are being over looked and as a doctor once said to me in the past sometimes it is harder to be the sibling of an ill child than the child who is ill. So it’s important that they know they can talk in a non judgemental environment without feeling guilty about it.
“Patreece would cry if her sisters are sick or sore, but she never gets frustrated. Michaela realises that she must be annoyed sometimes and she wants her sister to meet other children in the same situation who understand her.”
“I think raising awareness to is a big thing for Michaela she wants people to understand that although she does face these challenges she is still a little girl with hopes and dreams and aspirations like everyone else,” Emma said.
‘Hope Builds Strength’ will launch with a public Afternoon Tea event in the Exchange in Buncrana, Sunday 27th May at 2pm.
The event is called Mighty Mino’s and Brave Bean’s Afternoon Tea, in a nod to Michaela and Rosie’s perseverance and their nicknames, Mino and Bean.
Emma added: “On Sunday we will launch the support group however I want to stress the afternoon tea is open to everyone. We would invite the public to come along and show support for these very brave and beautiful children and their families. There will be tea, coffee, cake, face painting and balloons.”