#411
Posts: 1 | Threads: 0
Joined: May 2011
Reputation: 0

  • Registered
Hi im leanne i have two children emma who is 3 and ben who is 7 months old they both have a genitic condition which we are yet to discover exactly what it is their dna is being checked at the mo. they both are completly blind and have kidney problems my daughter is on dialysis at the min but ben seems to be doing ok at the min .emma is the hardest to look after she still cannot talk or walk and it can be really hard to understand what is upsetting her at times when she is happy you would think she was a different child its to early to say what ben will be like but im hoping he can at least talk would love to hear from anybody who has a child or children with simialar things are even just to get some support from any of you perants out there thanx leanne.
#412
Posts: 3 | Threads: 0
Joined: Jun 2011
Reputation: 0

  • Registered
Hi i have a little boy called Daniel, he is nearly 4 and has CP. he cant sit, walk, crawl, talk, or eat (he is peg fed). He does however move around in circles on his back. He starts school in September. Most nights he wakes up for a couple of hours and just wants attention, unfortunatley we (Mum and Dad) both work full time so loosing sleep is not good for us. would love to chat with others and get ideas that would help.
C.Jones
#413
Posts: 3 | Threads: 1
Joined: Aug 2011
Reputation: 0

  • Registered
i have luis who is now 15 on 31st august he has cerebral palsy and epilepsy in which he cant talk, walk, feeding peg but he has the lovliest smile ever. although when he was a baby they couldnt figure out what he had as he was hypotonic and had breathing problems.
i think each week for the first year we got a different diagnosis's with very short life spans of a few months but he has amazed all the proffesionals wrong.
I also have a 19 year old with the genetic condition prada wili, with learning disabilities but he has just finished a joinery college course
#414
Posts: 2 | Threads: 0
Joined: Aug 2011
Reputation: 0

  • Registered
Hi guys, I'm Sophie the mum of 1yr old Arnold. He has suspected CHARGE syndrome but frustratingly everytime we have a diagnostic procedure the results come back not as expected but some rare findings which only seems to complicate matters further! Currently Arnold is profoundly deaf due to no auditory nerve being present on either side, has poor vision, weak muscle tone - still cannot sit on his own, balance issues, high pain threshold, left sided facial palsy, renal abnormalities, bronchal malacia on the left lung and is currently being fed via PEG tube but only for fluids - he eats food normally but won't drink although a swallow study showed that it is safe to do so... He is gorgeous and very endearing but I must admit when I was pregnant I did not expect my babies first year of life to be anything like this! My mum always says special babies are born to speacial people which makes me smile (sometimes!) I am currently fixated on getting a firm diagnosis for Arnie but as you guys probably know that is a lot easier to say than do!
#415
Posts: 3 | Threads: 0
Joined: Sep 2011
Reputation: 0

  • Registered
(12-01-2009, 08:01 AM)Daniel Wrote: Hello Everybody,
I was just thinking it would be helpful if we all got familiar with each other and our children.
If everyone would post their childs diagnosis maybe it will be easier to find each other!!
There may even be someone here with the same problems and i think it will quickly help identify whos who and to see at a glance who is in the same shoes as you.

Lucy will be along shortly to introduce our son Euan.

My son Adam is 2 and a half years old and has Emanuel Syndrome. Hes our first child and now ive discovered i carry the gene i think he will be our only child. Hes a lovely happy boy but has severe global developmental delay and cannot walk or talk or crawl. He can smile and laugh though which is amazing.


Users browsing this thread: 1 Guest(s)