Richard pictured at CDKL5 Awareness Day with Jonna, Emma, Maia and Brendan Malone. Picture: Oisin Mc Hugh.
The second annual awareness and charity walk for CDKL5 took place last Saturday September 27 in the People’s Park. Maia Malone, a 7 year old girl from county Limerick suffers from this rare neurological disorder, resulting in daily seizures requiring around the clock care. Recently, she has started taking her first independent steps after turning 7 in August. ”They are like baby steps, but they are bringing a lot of joy and hope for us,” says Jonna Malone, Maia’s mum. Last year Jonna’s work colleagues at Our Lady of Lourdes Community got together with some local people and organised a charity awareness walk in support of Maia and CDKL5 as a surprise for the family.
This year the group reunited with the aim of making the event even bigger including balloon releases and a bake sale in order to raise awareness of this rare condition. Groups of children from Our Lady of Lourdes PS, St. Augustine’s School and Colaiste Nano Nagle did balloon releases, sending environmentally friendly biodegradable latex green balloons soaring through the air. Green is the international colour of all the CDKL5 organisations around the world. Students in Crescent College Comprehensive arranged a bake sale for the occasion and raised some funds for the cause.
A happy crowd gathered together in the sunshine in People’s Park, welcomed by the CBS Pipeband. Three families with children affected by CDKL5 took part in the event, alongside Maia were Lauren from Tralee and Alex from Bray, three of five of the children in Ireland currently diagnosed with the condition. The parents of the girls invite anyone who may have a child with the disorder to get in touch with them through the Rett Syndrome and CDKL5 organisation, as peer support can be a vital resource to have.
Lead by the merry sounds of the CBS Pipeband the group set off for their walk through town into Arthur’s Quay Park, spreading CDKL5 awareness by distributing small information leaflets along the way. On arrival at the riverside everyone got to enjoy a skills demonstration by some soccer players from Hyde Rangers Football Club and Our Lady of Lourdes, St. Joseph’s and St Saviour’s Community Games, lead by Dean Phillips. At the Peoples Park I gave the countdown for the balloon release, and a hundred green balloons were sent off into the atmosphere. It was a very special day and I was honoured to take part.
Many thanks to the sponsors: Ballinacurra Gaels, Coisceim Educaito centre, Drugs Education Prevention Team, Hyde Rangers Football Club, Limerick City Community Development Project – OLL, Niamh’s Hair Salon, Oglaigh Naisiunta na Heireann Teoranta, Our Lady of Lourdes Community Services Ltd, Our Lady of Lourdes Primary School, Our Lady of Lourdes, St. Josephs and St Saviour’s Community Games, Prospect Football Club, Sisters of Mercy, St Augustine’s School, Southill outreach, Summerville Football Club, Steps School Completion Programme and WestEnd Youth Centre.
For more information on CDKL5 you can visit www.cdkl5uk.org or www.cdkl5.com or email [email protected]
Photos by Oisin McHugh for ILoveLimerick.com 2014. All Rights Reserved
CDKL5 is the name of a gene on the X chromosome. It’s also the name used for a very rare condition that results from abnormalities on this gene.
As a result of this the condition is more common in girls than boys. This condition starts in infancy and causes difficult to control seizures and neurodevelopmental impairment.
It affects children all around the world, and currently there are an estimated 800 diagnosed cases. However more children are being diagnosed as awareness of CDKL5 increases.
Children with CDKL5 require intensive speech, vision, physical and occupational therapies. Funds raised at this well worthy event will benefit children with CDKL5.
Those affected by CDKL5 will suffer from a number of varying symptoms. Some of these symptoms include epileptic seizures that may start early onset in the first 5 or so months. The seizures can take many forms including myoclonic jerks.
Other symptoms include:
- Infantile Spasms
- Microcephaly (smaller than usual head size)
- Hand wringing and mouthing
- Marked developmental delay
- Limited or no speech
- Hypersensitivity to touch
- Lack of, or poor, eye contact
- Gastro-oesophageal reflux
- Small feet, cold feet
- Breathing irregularities
- Teeth grinding
- Poor muscle tone
- Limited hand skills
- Crying or laughing episodes with no cause
- Some autistic-like tendencies
Most children affected by CDKL5 suffer from seizures that begin in the first few months of life and developmental skills may be lost due to the severe seizure disorder. Most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties. As time has gone on it appears that there might be other symptoms that play a role in the condition.