This month our Charity of the Month is CLIMB, the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of patients worldwide.
We’ve chosen to support this charity via the amazing fundraising efforts of three London Marathon running Winchcombe Mamans Victoria Jeffs, Louisa Hancox and Lindsay Morrison.
Before we tell you how you can donate to this amazing charity here’s the story of Michelle Hancox, another Winchcombe Maman, who has had to call on the help of CLIMB.
‘LCHAD – INHERITED METABOLIC DISORDER
George Hancox, our little boy was born 10 weeks early due to him having this disorder. We did not know it at the time, and after 1 week in the high dependency unit at Gloucester Hospital and 5 weeks on the Special Baby Care Unit in Cheltenham Hospital he was allowed home.
We thought he was doing quite well, like you do, but he just wasn’t putting on weight. He was also quite sickly, but with a little one you expect that. At eight months I woke up as normal one morning and looked at George in his cot and thought he didn’t look quite right. I picked him up and took him into the living room, he was very limp and wouldn’t wake up properly. We rushed him to the doctors who couldn’t find a temperature as he was so cold, they told us to take him to Cheltenham Hospital right away.
Once at the hospital they thought he had meningitis and he underwent a lumbar puncture to check. When this was ruled out they took him by ambulance to Gloucester Hospital where he had blood tests and examinations to find out what was wrong.
Eventually, after about a week of being in and out of hospital they told us that he had LCHAD. We were taken to Birmingham Children’s Hospital, where they specialise in these disorders, to talk to the Metabolic Doctors there who explained to us all that it entailed.
George could not have any fat in his diet as he could not process it in his body. We had been feeding him full fat milk from a little baby and had been, without realising it, damaging his heart and liver. We immediately had to put him on a special milk formula and we had to feed him through an NG tube, which I had to put up his nose and down into his tummy, every night.
Basically this means that he cannot be starved and has to be fed every 4 hours. If he is not fed regularly then his body will break down muscle and cause damage to his organs. He has a heart condition and he needs a heart scan regularly to make sure it doesn’t get any worse. He now has a gastrostomy peg in his tummy which we feed him through every night with a milk formula. We also use this peg if he is off his food, or is unwell in any way. We have to try to keep him away from any sickness bugs as if he catches one it will mean a trip to the hospital in Gloucester, where he will need an IV drip to feed him. When he does any exercise he needs to have a glucose drink before and during to give him enough energy.
George mainly lives a normal life, obviously things are different for him, especially when he goes to parties as I always take a lunchbox for him instead of party food. He is very good with this though and he knows what foods he can and cannot have.
We have quite a few visits to the Birmingham Children’s Hospital to see metabolic doctors and dieticians etc. Also the organisation CLIMB have been very helpful with their support and information.
George’s condition is thankfully very rare but since we have been going to the Hospital we are now aware of just how many metabolic conditions there are. Birmingham Childrens Hospital specialise in these conditions and are a real life line whereever you live in the Midlands and further afield.’
To find out more about our Charity of the Month and how you can support them or raise awareness take a look at our dedicated page. In February 10% of all CheltenhamMaman profit in February will be donated to this worthy cause. To donate directly to the Mad Marathoner’s marathon efforts visit their Just Giving fundraising page.