Story
Thanks to the incredible support we have received, we have raised all the money we need for Mim’s specialist tube-weaning treatment! We've discussed this unusual predicament with Tree of Hope, and they've agreed to let us use the extra funds towards Mim's new specially adapted bedroom & wetroom. If you'd like to know more about this then please check out our blog,
http://www.perfectinweakness.co.uk/more-room-for-mim/.
We really appreciate the generosity of everyone who has supported us, and we willkeep you updated how Mim progresses with the treatment. However, the storydoesn’t stop there for Mim – she still needs more help to learn to sit up,crawl, walk and talk, and she’ll continue to need therapy to achieve all thesethings we usually take for granted. For that reason we’ve decided to extend thefundraising target, to make sure that any money given now will still godirectly to pay for the extra equipment and therapy Mim needs. We’ve raised allthe money we need for Mim’s specialist tube-weaning treatment, so please don’tfeel obliged to donate any more, we are only extending the target to make sureany more donations will be used for Mim’s benefit (rather than redirected forother children). Thank you again for your support, it means so much to us.
Our lovely littlegirl Mim has had a difficult start to life. She suffers from globaldevelopmental delay, which means whilst her little friends are running around,Mim cannot yet sit up or crawl. The doctors have been unable to find theunderlying diagnosis for her problems, but she struggles with severe reflux andlow muscle tone, which make it very difficult for her to eat and keep fooddown. Instead of eating meals, Mim has all of her food through a tube insertedinto her stomach. We want to give Mim all the help we can to be able to eatreal food and say goodbye to her feeding tube, and we need your help to dothis.
We are pleased to say that thanks to her feeding tube Mim isnow gaining weight, but we don’t agree with the doctors’ opinion that this isgood enough. Mim still spends around 4 hours a day attached to her electricfeeding pump, and gets all her nutrition from an artificial high-calorieformula. Our hope for her is to be able to eat real food like a normal child,so she could enjoy family mealtimes and spend less time attached to the feedingpump. Eventually we would love to beable to remove Mim’s feeding tube, but we are not getting the medical orfinancial help we need to do this from the NHS.
Fortunately there is a team of tube-weaning experts based inAustria that provide treatment for children like Mim in order to wean them offtube-feeding and on to real food. They specialise in helping children overcometheir ‘oral aversion’ and dependency on the feeding tube, and have a high successrate in establishing normal eating. We believe this is exactly the help Mimneeds, and are hoping to take her to one of their intensive tube-weaningcourses in the Netherlands (there is currently no provision like this in theUK).
Before Mim would be able to successfully take part in this course, she wouldneed to be able to sit independently and tolerate first tastes of pureed foodin her mouth. These are big hurdles for Mim that will require extraphysiotherapy and occupational therapy, beyond what is provided on the NHS. We’redoing everything we can to provide for her, but this extra therapy andintensive treatment simply isn’t covered by the NHS or disability benefits, andwe need your help to make it possible.
Please would you consider making adonation to help get Mim eating real food, so we can say goodbye to the feedingtube?
We’re hoping to raise £14,000 to pay for the specialist help Mim needs in orderto eat real food for herself. We expect Mim will need 12-18 months of extratherapy before she will be able to attend the tube-weaning course, which willcost around £5500*. The intensive tube weaning course (including assessmentcosts, travel and accommodation) costs a further £8500. [STOP PRESS: The dropping euro exchange rate means this is now only £8000! 14/03/15]
We would be gratefulfor any donation, big or small, and we really appreciate your support.
- Please share this page with friends and family, and on social media using the links at the top of the page.
- If you’re interested in raising more money for Mim by running a sponsoredevent, please get in touch (email support@perfectinweakness.co.uk)
- If you’d like to find out more about us, you can ready our story on our familywebsite www.perfectinweakness.co.uk,or please do get in touch.
- If you’d like to know more about any of the therapies ortreatments described, you can visit www.footstepscentre.comand www.notube.com
We’re very grateful to Tree of Hope, who are helping us tomanage our fundraising and hosting this justgiving page. Should we exceed the target amount (or if wedo not raise enough funds, or if they cannot be used for any other reason) thefunds raised will go to the general funds of Tree of Hope to assist othersick children.
* If you would like to see a more detailed breakdown of this budget, please getin touch.