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Gabby Carter

(Continued)

I am afraid to say at times I got terribly rude, and would retort back angrily saying "No she has not!"... And not even offer them an explanation, not that I could anyway... there wasn’t one.

The dermatologist read the letter then asked more questions, he mentioned a very rare disease called Porphyria... Gabby probably did not have it, but that they would test her for it anyway just so they could eliminate it. The tests consisted of blood.... urine.... and stool samples, and I would have to wait three weeks before the results would be back, picking Gabby up and on leaving the office I once again felt so totally fed up... and just as I was going through the door the doctor said "By the way, have you ever noticed a reddish residue on Gabby's nappies?"

I turned at looked at that man straight in the eyes and replied..."No"... Then carried on straight out through that door!

Why the hell did I just say that? I asked myself, what purpose did I serve in saying that? I had lied.... I had just lied! Why?

I knew why... if I denied it, I could pretend to myself that she did not have this so called rare disease... I felt so afraid... its probably like discovering a lump in your breast, a lump you know should not be there, you cant help but continually touch it, as part of your mind is telling you.... go on.... feel it... its real.... its there... the other half saying don’t touch it... if you don’t touch it.... you’re not feeling it.... so its not there, ignore it... simple really, I was in total denial.

It was three weeks that felt like an eternity, for I spent the time continually battling and arguing with my inner self, trying to come to terms with the fact that Gabby just could have this porphyria thing. Then totally rejecting the whole idea of it, she couldn’t have it.... she just couldn’t!

For one thing, it was supposed to be hereditary, as far as we knew... no one on either sides of the family had ever heard of it let alone suffer from it.

I took Gab back for the results, and I was actually trembling in fear, and felt physically sick as we sat down outside the consulting room, and sitting there waiting our turn to go in, words just kept turning over in my mind... they would not go, I felt like screaming out loud "Stop it... Stop it.... Stop it!" The words were like a stuck record...."Porphyria.... Porphyria..." over and over again. Next thing I knew the nurse was calling us through, I didn’t want to get up, I did not want to go in....not to hear that Gabby had something else, this was unbelievable.... there surely could not be more wrong with her... this wasn’t fair, the heart problems were enough to contend with.... she was sensitive because she was a little blondie... that was all it would be.

We went in and sat down my heart was thumping so hard I imagined everyone could hear it, I never saw or took anything in, my eyes were fixed on that doctor.... boring right through him as if I were trying to get inside his head, willing him with all my might not to say it was porphyria... he smiled at us, I thought "For God's sake.... you are sitting there... smiling at us and you are about to put a life sentence on Gabby... some people are so insensitive"!!

"Well".... He said, “its not porphyria, the tests came back negative.... we are back to square one"!

Hah.... Gabby did not have porphyria... she did not have it! I was hysterical inside.... I knew it, I just knew she did not have it, huh.... could have told him that right from the beginning.... honestly.... always barking up the wrong tree these doctors....

The doctor was practically talking to himself, I was in a daze.... the relief was immense, I even thought of telling him that actually Gabby's nappies did have a reddish stain on them, but I thought better of it.... it was of no consequence now.... was it? Gab did not have porphyria did she? So, end of story.

Gabby was now being referred to St Johns hospital for skin diseases up in London, for further tests. So off we went, I was so full of expectation not for one moment able to imagine what they were going to come up with, I just hoped to God they came up with something.... and so thankful it just was not that porphyria thing. By this time, I have to admit depression was creeping in, Gabby still.... of course had the heart probs, and still on a load of medication, but since the day she came out of hospital after having the line put in her head, she had never slept a whole night through, and I don’t mean waking up now and then, she woke every hour, she didn't just cry... she screamed and screamed.... I don’t know why... and never got to the bottom of it, I was terrified she would harm herself due to the heart condition, daytime was even worse...we couldn't go out, I just could not take the risk the pain Gabby would suffer as a result. And I was also told skin cancer was a possibility....

At St Johns it was another interrogation. Going through the same old questions again and again.... questions that I must have answered a thousand times before over the past two and a half years, repeating myself time and time again... hey.... just turn on a switch and automatic memory comes into play....

They decided not to test for anything other than the porphyria, as far as they were concerned she had it, she had all the classic symptoms, and once again Gabby had blood, urine, and stool tests... I was really mad and arguing with them, what the bloody hell were they playing at? Gabby had already been tested and it was negative.... they were insistent that she had it, and for some reason the tests at the military hospital had not shown it up, apparently, when stringent tests are done in a lab, the stools blood and urine are fluorescent, the new results were due in the morning. Once again I was asked about reddish stained nappies, this time I had to tell the truth... there was no point in denying it now.

It was a hell of a long night, I sat up till the early hours of the morning.... next to Gabby sleeping in her cot, just watching her sleeping, tears running down my face, I felt such heartache for her... why her? Why should this little girl suffer so when there were so many bad people in this world who surely deserved the suffering more than her? Why could it not have been me? For I would willingly take on the pain and suffering myself, I would lay down my life for this little girl.... I would sell my soul for the price of a normal life for her... Gabby was my whole life, a purpose to live for... she was the light that led me away from a compelling pull of darkness, I felt as though I had wandered into a dark tunnel and there was no light at the end of it....

Morning came, so did the doctors... loads of the them.... they almost filled the small room, I felt like a rat in a trap, there was no escape.... they barely even looked at me... they spoke to each other.... yes... it was porphyria.... the full pretty name in medical term is Erythro-Poetic-Proto-Porphyria.

Once again I was struck dumb.... never moved a muscle, except when I moved my head to look at two of the doctors, one was saying to the other "What if she falls pregnant again?" "Oh" said the other in reply "She will have grounds for abortion".... Porphyria is a very rare condition... there was no cure.

Erythrism-Poetic-Proto-Porphyria is caused by an enzyme which is missing from the blood, a metabolic condition, I was told everybody had porpherins, if you have the enzyme then they are controlled, as Gabby's was missing she made far to many, they were totally out of control. With this process happening it actually draws sunlight to the skin, hence, the instant burning sensation, itching and inevitable swelling and scabs. There are different types of porphyria.

On leaving hospital Gabby was put on a course of beta-carotene capsules which consists of a highly concentrated extract of carrot, when taken orally the skin actually turns orange in color, this is supposed to give the skin a false tan which in turn helps deflect the suns rays away from the skin, within a few weeks of taking it Gabby's skin indeed did go orange, she looked awful, it certainly did not look natural and on certain parts of her face and hands where the skin was harder from previous burnings the color was more concentrated and darker than other areas, which left her very patchy and very noticeable.

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