We are reaching out from the bottom of our hearts for help to get Frankie the help she needs. Every single donation, no matter how small will mean so much to us and if you can’t donate please just raise awareness by sharing Frankie’s campaign on hirschsprung disease.The disease she has suffered with since birth.
Her name is Frankie but she get's called dinkie as she is small for her age, Since she was born she suffered many years not being able to go to the toilet without a lot of pain involved, the doctors kept sending us to a dietitian,she lived on Movicol for a long time but the problem didn't go away.For years Frankie's problem went on and on undiagnosed,She finally got diagnosed age 7 but by then the damage to her bowel is far greater than a new born baby.
2015 Frankie had her bag colostomy fitted,2016 Frankie had her major opp,before then and now she has had a few opps in between,manual evacuation's at Chelsea to biopsy's at Chelsea hospital.
we are asking for help to give this brave little girl,who still has a long journey to go in and out of hospital something to look forward to,Frankie is one of six and they all live at home,we struggle day to day to get by,i have a life threatening illness and metal heels which stops me from doing as much as i want to do to be able to provide something special that will bring Frankie up on a high,i hate seeing her unhappy or in pain, thats the reason im asking for a little help. Frankies wish is to go on an airplane,doesn't matter where,my 3 younger children have never been before on a plane and the 3 older ones cant remember over 10 years ago.even if frankie and myself could fly anywhere it would make her dream come true as this is what she wants to do.i also think it would give her hope that things do happen(GOOD THINGS)as i feel that sometimes frankie feels that she will have to live with her colostomy bag forever which hopefully she wont.
Over 2 years Frankie has lived with her colostomy bag, its been a long stressful journey, she has suffered so much pain, but this little now 9 year old girl is one brave fighter, at one stage Frankie had given up, even refused treatment, throw the gas and air mask at the surgeon and was off the bed, she started to become withdrawn, like there was no hope, any way Frankie has had pull through surgery in January 2016.
Summer 2016 we found out the pull through surgery for hirschsprung disease didn't work.
Febuary 1st 2017 Frankie went back into hospital ,Frankie went in for big opp,was ment to be there 1/2 weeks,they opened her up and found a hole in the joining of the bowel that they did before,a hole from the last big opp so they decided to use this hole and stretch it,Frankie will return to hospital in a couple of weeks and this will be repeated a couple of times,if the hole stays open then good news,she wont need the pull through surgery again,when all is healed there next move will be to put her back together again,so only one night in hospital for us this time,she is home and still bit of pain,moving around slowly but shes a brave little fighter,fingers crossed one day she will be fixed,a long journey to go but hopefully one day frankie will be fixed.
Here is some info about hirschsprung disease !!!!
So what is Hirschsprung’s disease, it's a rare disorder of the bowel, most commonly the large bowel (colon), which can lead to severe constipation and intestinal obstruction. Hirschsprung’s disease affects one in every 5,000 babies.
Normally, the muscles in the bowel squeeze rhythmically to push faeces (poo) through to the rectum. In Hirschsprung’s disease, the nerves that control these muscles (ganglion cells) are missing from part of the bowel. This means that faeces cannot be pushed through the bowel in the usual way.
The length of the affected part of bowel varies from child to child. Most commonly the rectum and/or sigmoid colon (the last parts of the large bowel) are affected. The entire colon is affected only very rarely.
What causes Hirschsprung’s disease?
Hirschsprung’s disease is a congenital (present at birth) disorder. While your baby was developing in the womb, the nerve cells did not develop through the full length of the bowel. We do not know what caused this to occur, but it was not due to anything that happened during pregnancy. A number of genes causing Hirschsprung’s disease have now been identified, although not all children have a specific genetic mutation
What are the signs and symptoms of Hirschsprung’s disease?
The main symptom of Hirschsprung’s disease is constipation, which cannot be treated using laxatives or softeners. This occurs because faeces are pushed through the bowel until they reach the affected part. As this part of the bowel cannot squeeze rhythmically to push the faeces through the bowel, the faeces cannot move any further. As more food is digested and turned into faeces, the bowel becomes blocked causing discomfort and a swollen abdomen.
Often babies with Hirschsprung’s disease do not pass meconium – the dark faeces passed in the first day of life. Other symptoms include a swollen abdomen and vomiting green bile.
It is more reliably diagnosed by taking a small piece of tissue from the bowel to examine under a microscope. This is called a rectal biopsy. This may be done on the ward in smaller babies but older children will need to have the biopsy taken with a general anesthetic. If the piece of tissue does not have any ganglion cells, this means Hirschsprung’s disease has been diagnosed
If a child is older or not very well, the surgeon may suggest a staged operation. First, they will create an artificial opening (stoma) for the bowel as a temporary measure. This will allow your child to pass faeces through the stoma, allowing their health to improve before the pull-through operation. If your child is likely to need a stoma, the stoma nurse specialist will visit you.
thank you for your time in reading this, good luck Frankie xxx