Callum Edwards is a happy 2 year old boy who was born with a myriad of health challenges that prevent him from having a regular life. Callum doesn’t have a general diagnosis to explain all his health problems yet. However, genetics are currently trying to find an explanation.
This year he has only managed to stay well for 1-2 weeks.
Callum’s health challenges include:
- Chronic severe hypoglycaemia, which causes hypoglycaemic seizures.
- Laryngomalacia: floppy larynx, which prevents him from swallowing.
- Small jaw causing his airway to flop back.
- Large tongue which can occlude his airway.
- Severe gastro-oesophageal reflux and aspiration episodes, for which he had a nissen fundoplication at 11 months old.
- Hypermobility with external rotation left leg.
- Mild hypotonia, which is a state of low muscle tone.
- Recurring chest infections.
- Allergy to cow’s milk protein.
- Intolerance to soya, glucose, sucrose, carbs and starch.
- Low iron levels.
Callum had a tracheotomy at 8 weeks old, which enables him to breathe and talk. Callum also has a gastrostomy in his stomach for 24 hour constant feeds via a pump and a port a cath in his left shoulder which is regularly accessed for IV antibiotics and a cannula left in.
Callum weighs 13.8 kg and he is around 98 cm tall he hasn’t put any weight on since January.
He is ill very often usually with chest infections. This year he has only managed to stay well for 1-2 weeks. He sweats copiously with minimal temperature changes and with little activity. He is often pale and lethargic. He gets very breathless and can’t manage much more than 10 minutes walk before becoming unsteady on his feet and complaining with pain.
In order for Callum to be able to feed a gastrostomy has been placed in his stomach for 24hr constant feeds.This is operated via a pump as can be seen in Figure 2.
Callum is able to move about if his pump, food and the tube that connects it all are placed in a backpack as can be seen in Figure 3. However, the weight of the equipment and the food on his back not only add to his exhaustion but also impacts on his posture and spine. When Callum gets tired he tends to carry his rucksack but only for short periods of time or mum carries it for him (Figure 4).
The challenge is to find a solution that enables Callum to use his equipment independently without impacting on his posture. Consideration MUST be given to every aspect of Callum’s health.
Callum has asked for our help, and we need yours!
If you want to help in anyway, then contact us now at firstname.lastname@example.org