#1
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hi.

i have 2children one is 2 1/2 (Khian) he suffers from a very rare disorder called Zellwegger Syndrom, this effects his eyesight, hearing, epilepsy, hypermobility,he has no speech. i particuarly find it difficult going out and talking to other people as i dont like to feel sorry for myself, i love khian a huge amount and think that is all that matters although my life has just become a little harder as we have had my second son Marlei his is just 8weeks old and so far doesnt have problems so fingerscrossed he is all okay.
#2
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Hi there,

My name is Lucy and I am one of the co-founders of this forum. I completely see where you are coming from (especially with the addition of a young baby). I have 3children, Emily7, Euan2 1/2 and Alfie 12weeks! My son Euan has a rare genetic disorder called cystinosis, this causes renal problems (including failure at some point before adolesence), photophobia (he has crystals in his eyes) he previously had vitaminD resistant rickets which caused his legs to bow and recently we have found out he has an externally rotated femur in his left leg causing him to waddle and fall over frequently (we think this was caused by the rickets pre-diagnosis). His condition affects every cell in his body so as he gets older it will cause problems in many places including muscle weakness. He also has a slight delay in his gross motor skills and has just started to catch up from a speech delay.

The new addition of Alfie has made everything more complicated, it was already a task to get out what with euans cocktail of medicines (he is on 10 a day some even at 3am which i have to wake up for). Nappies are endless in my house as euan wees all the time and now alfie has arrived theres double.

I love all my children dearly but I do believe I have a special bond with Euan because of all he has been through. It took 8months to get a diagnosis and it was one I didnt really expect, the longer it went on the less serious i thought it would be (I couldnt have been more wrong). But overall Euan is the happiest boy alive regardless of his problems. He has certainly made me a better person.

Pregnancy was a nightmare with Alfie, I found Euans care harder with all the sickness I suffered at first and often went through feelings of failing him (which was probably made worse by the fact pregnancy makes you more emotional anyway!) and then I also had the worry that Alfie may also have cystinosis. We only got confirmation when he was about 8/9weeks old that he was an unaffected carrier which was a great relief.....but I also look at Euan and think out of 3children....why him?

Still, you carry on, I have just started going to a support group to try and meet other people in similar situations. Although most of the people there (its a very small group) have children with ASD I still find it helps, I totally believe that even though our children may have a different condition, alot of the emotions we go through are similar!

Thanks once again for joining and you will probably find either me or my partner online at various points in the day if you ever just want someone to talk to, thats what we're here for!

Lucy xx
#3
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Hi Zilah

I can appreciate what you mean about finding it difficult to meet other people. I find it hard to cope with people who are 'pitying' of my situation if you see what I mean as I find it very unhelpful. I just want to be treated normally! I am learning the art of recognising those who will or wont make suitable friends. Thankfully there are many potential friends out, we just have to go out to find them, which is the hard part. Do you have an Oppo group near by?
#4
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(10-12-2009, 07:40 PM)ninsandpeedles Wrote: Hi Zilah

I can appreciate what you mean about finding it difficult to meet other people. I find it hard to cope with people who are 'pitying' of my situation if you see what I mean as I find it very unhelpful. I just want to be treated normally! I am learning the art of recognising those who will or wont make suitable friends. Thankfully there are many potential friends out, we just have to go out to find them, which is the hard part. Do you have an Oppo group near by?

Agreed it can be hard to make freinds because you are not looking for pity you want people to just understand.
This is the one major reason this forum is alive right nowSmile
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#5
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hi.
i dont have an oppo group but am good friends with the local childrens centre manager and together we have set up a SEN group it is also very small and is just me and one other person that goes. i know it sounds silly but sometimes i dont want to sit and talk about khians condition as it is quite upsetting and people just tend alway say that im coping well, when really i feel that im not, i have to put on a front otherwise i would just be lost in my own feelings an i have 2children who need me.
on the other brighter hand of life khian has started new private physio and we can see an improvement already - it is very expensive though so if anyone has any ideas for fundraising would be great to hear. Smile


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