Explanation on nephew's illness..

I just wanted to share what exactly is wrong with my dear nephew.

He was born with marfans disease which he inherited from his father.
(An inherited connective tissue disorder with characteristic skeletal, dermatological, cardiac, aortic, ocular and dural malformations. Caused by a variety of mis-sense mutations in gene encoding for fibrillin 1, an elastin-matrix glycoprotein essential for the formation of cellular microfibrils. The gene is located on long arm of chromosome 15. Pattern of transmission is autosomal dominant with complete penetrance. There is much variation in genotype. Phenotype varies within and between families with the same genetic abnormality, leading to protean and variable manifestations of the condition in given individuals).

Symptoms The condition can be asymptomatic. Patients are disproportionately tall and thin with unusually long arms and legs compared to their trunk (dolichostenomelia) and a 'cadaverous' physique. They often have long 'spidery' fingers and toes (arachnodactyly).

Hope that explains a little about marfan's for you ..

Now ontop of this he has already had one hernia operation when he was just a few months old. This went relatively smoothely and healed well.

Now he has a another HERNIA which has prevented him from feeding and also effects his breathing a little. He has a main tube feed which only specialist doctors and nurses can put in and is on a high calorie drip to help gain weight . As he is not strong enough yet to cope with operation.He has tubes coming out of eveywhere the poor thing.
His diaphram is perferated and stomach is squished through it, so stomach is either side of diaphram. I cannot explain it any clearer than this I am afraid.

Please continue praying for him as he is a frail thing fighting to stay alive...

update on nephew

For those who are praying, my nephew is at a specialist children's hospital in Birmingham. He has been diagnosed with a hiatus hernia, a perforated diaphragm, and severe malnutrition. He is awaiting an operation as the hernia is putting pressure on his stomach and lungs and causing his inability to keep food down.

I am saddened it took so long to diagnose this, as the prolonged process has led to the malnutition and suffering of my little nephew which could have been avoided. He is very lethargic, and we hope he will be operated on within the next two days.

Thank you for your prayers, please keep praying!

Save our MS Nurses.

Please help by signing this petition about cutting back Multiple Sclerosis nurses.
They have been a lifeline for me and I am sure they have been for others who suffer.
Its simple will take just 1 minute and its being handed in On Monday.

Its takes just a minute and needs to be done by Monday as it is being printed off and handed in at Downing street on Monday.


I do understand cutbacks have to be made , but can they not see it is cost effective keeping MS nurses as they help many people manage disease in a home enviroment rather than at a hospital.

I saw this and thought it fun..

Appetizer = On average, approximately how many times per day do you yawn?
Far too many , and I do go do bed at a reasonable hour!

Soup = What was your most memorable school field trip?
Three counties Show and I got lost , my name was over the loud speakers I was so embarrassed and I got so told off by my teacher!Blushes..

Salad = Fill in the blank: I was extremely --------------- this week.
I was extremely tired this week!

Main Course = Which color do you think of when you hear the word "soothing"?
White, reminds me of fluffy clouds drifting on a summer day...Comes back from her dream world lol.
.
Dessert = What is something that, if you had to, you could save up the money to buy within one month?
Would be several new shirts for my husband..

This feast was on a my sister in laws blog and I thought it fun.