Dawn Till Dusk
2017
Jack’s Story
On the 29th July 2005 a tiny blonde, blue-eyed boy was born. Jack is his
name. He was delivered by emergency C-section and had to be transferred
by ambulance to Crumlin children’s hospital later that day.
He has Down syndrome and cardiac defects. He went on to spend over three years in Crumlin, only ever
getting home for a few days at a time. It took doctors almost two years to diagnose CINCA syndrome, (chronic infantile neurological cutaneous articular syndrome). It is an extremely rare degenerative auto-inflammatory disease. He went to Great Ormond Street hospital in London twice when he was 3 years of age to get a
second opinion. On both trips he became very unwell and had to be blue-lighted to hospital.
Jack is now 11 years old and is under the care of over ten different teams in Crumlin children’s hospital and
Temple street too. His primary medical teams are Cardiology and Rheumatology. He also sees Respiratory,
Immunology, Infectious disease, Opthalmology, Audiology, Neurology, Gastro-intestinal, Orthopaedics, Haematology when necessary and Endocrine. He has seen multiple other teams too on his journey. He also has a
general paediatric who oversees and co-ordinates his care.
Jack was cared for by the Jack and Jill children’s foundation until he was 4 years old. He attends LauraLynn
hospice once a month for respite. These two charities are so important for families like Jack’s.
He also attends St. Raphael’s special school, also charity run by St. John of God in Celbridge, Co. Kildare.
Jack is the only known case of Down syndrome & CINCA syndrome worldwide. He has further cardiac and
lung issues, he has scoliosis and hip dysplasia, he is tube fed over 24hrs a day, he is incontinent, he is non
verbal but now trying very hard to communicate with both sign language and speech.
He has elevated brain pressure and chronic arthritis. He cannot walk so uses a wheelchair. He has hearing
aids which he won’t tolerate & has to wear orthotics when using his walker. He has had heart surgery twice
and will require further surgery.
Despite all of this he is the happiest little boy.
In recent years Doctors aren’t sure if Jack’s diagnosis of CINCA is correct so treatment is tricky. He is on 18
different meds numerous times daily including injections, inhalers etc. He is going to be in a study for rare
disease soon to see if anything will be revealed.
In the near future Jack will need adaptations to his house e.g. Ceiling tracking hoists, a wet room (bathroom
with wheelchair access) and probably some building work to his room and doorways etc. We may also need
to upgrade his wheelchair car at some point and it’s possible he may need to go to the UK for treatment.
Any funds that would be raised for Jack would go into his account for his use only. Also from time to time he
needs a new piece of equipment and not everything is provided by the HSE and sometimes people end up
waiting a year for a piece of equipment. So a nest egg to be able to purchase some necessary therapy
equipment would be of huge benefit.
-story by Jack’s Mum Aisling McNiffe
Dawn Till Dusk
2017
Alex’s Story
Alex is an extremely strong little 11 month old girl, but she has had a rough start to
life.
The day before Alex was due I noticed she had stopped moving, so we went into the hospital where she was
delivered by emergency C-Section. It was evident from then that something was wrong. Alex was rushed
to ICU where they put her in a hypothermic state to try and prevent any brain damage but unfortunately at
some stage in the 24hours before she was born she had suffered HIE (Hypoxic Ischemic Encephalopathy).
This is a type of brain damage that occurs when a baby’s brain doesn’t receive enough oxygen.
After 8 days in ICU on a ventilator an MRI was done which showed how extensive the brain damage was. The
doctors advised that there wasn’t much more they could do and it was agreed to turn off the ventilator, but
thankfully Alex continued to breathe on her own. She remained in ICU for 4 weeks before we got to bring her
home.
As a result of the brain damage Alex is visually impaired, has Epilepsy and Cerebral Palsy, and she is currently
fed and medicated through a feeding tube.
Alex requires extensive physiotherapy, occupational therapy and speech and language therapy (for her feeding). We get some help from Enable Ireland, but they have limited resources and Alex would benefit from
intensive rehabilitation. She attends additional private physiotherapy sessions and we have secured appointments with two organisations in the UK, Snowdrop and Brainwave, who specialise in supporting children
with cognitive and physical disabilities. She has been accepted by the Rehabilitation Institute of Chicago to
undergo intensive rehabilitation therapy which involves a 3 month stay with therapies 5 days a week to include: Physical Therapy, Occupational Therapy, Speech Therapy. Our goals are to improve her core and head
control, to gain better use of her hands/arms, and to have a vision assessment.
Children develop so much in the first few years of their lives and Alex needs all the help she can get to develop, and without early intervention she will not progress. We need to do all we can to help her reach her
potential, which we know will be limited, but the more help she can get the better her chances will be.
-story by Alex’s Mum Anne
Donate Online
Click Here!
Dawn to Dusk 2017.
Event run by Nostra team
to raise money for local families.
Date: 29th April
Nostra HQ to Talbot Hotel Wexford Town
4 teams
Driving 1,000kms - Lough Ness to Wexford Town
Walking 75kms - Brittas Bay to Wexford Town
Running 150kms - Nostra HQ to Wexford Town
Cycling 150 kms - Nostra HQ to Wexford Townm
One goal – raise €25,000
Supported By
Dawn Till Dusk 2016
Raised €20,823
This was donated to Zaki Djellabi, an eight
year old boy with a diagnosis of Cerebral Palsy
Spastic Diplegia with Ataxia and Dysarthria.
Nostra is not the recipient or the beneficiary of these funds. Nostra is simply acting as a facilitator in the processing of a gift from the
Doner to the Donee. No event costs are deducted from the funds raised and all event costs are funded by Nostra. All funds raised are
distributed without deduction to Donees