Life With Our Undiagnosed Special Needs Children | On The Red Dot | Undiagnosed - Part 1

[Music] [Music] [Music] from Young zakan didn't like their teeth to be brushed they can't speak but of course from their body language we know because every time you want to brush their teeth you will try to run away normally we start with D first because D is a little bit more compliant hi hi time I can't like going to be a lot more physical so every time we had to call reinforcement see everybody had to come and [Music] [Music] help uh we were told that because of the size of their head and the jaw is not growing normally so their teeth are all crowding also so because of the teeth being like too close to each other it's also quite difficult to clean the tee we have four children the is aif second is our daughter L and then Zak zakan are our third and about fourth children when I was pregnant with zakan compared to when I was pregnant with aif or Lina uh it was a little bit more difficult I couldn't eat much of literally throwing up every food that I ate even plain water during some of the skin doctors saw that one of the baby is not growing as well as the others Zaki was a smaller twin he had to be pushed to the ICU also because of his small size he was just only weigh about 1.5 1.6 kg zakan was not breathing when he was Bor so he had to through ICU to resuscitate him I tried to breastfeed thean but he just couldn't let the pediatrician at the hospital realized that he has no power movement so from then on actually we knew that he has this gut [Music] issue that qu as they grew we start that something is not quite right with Zak zakan they don't seem to be babbling eye contact also not too much y go go go go go go good go go at that point of time I wasn't very worried I thought that maybe they just need more time I tried my best to give them a lot of stimulation talking to them reading to them playing with them when they had fever Sly they also get the fits we really panicked because we didn't know what was going [Music] on brought them to& the doctor also wanted to do some observation one of the doctors noticed that none of them has any of features they don't look like uh any of us so he started to call all other doctors to come and look at us I was shocked actually it was much later when the other doctors start to come and then do the test then then I realized that you know they they are not normal children yeah I met zakya and zakan and when they were 15 months old uh they were first referred to me because zakan uh was uh had hp's disease the doctors also noticed uh that they had features of global developmental delay uh and they were wondering whether there was a cause uh that could unify all these diagnosis together when they have coexisting issues that all points towards a more fundamental uh cause there wasn't a very clear diagnosis I suspected that there was an underlying genetic diagnosis but based on their features it wasn't one of the common uh syndromes uh that we normally see a lot of genetic diseases are very rare it's quite impossible uh for us to have seen all uh the conditions some genetic diseases have 23 or 25 people in the world with it we may not immediately uh recognize it we used genetic test uh to try to help us but we didn't find any genes that were missing or extra and then the next question now is that if the jeans are all there uh is there a spelling mistake in the jeans you were only able to send a test for one gene at one time and it cost about $2,000 uh for each gene we have 20,000 30,000 jeans uh to go through all the jeans uh it's really uh difficult uh and we be very time consuming and very costly therefore the bridges program was birthed in uh 2014 bring all the research capabilities and all the access to Cutting Edge uh genomic technology to be used for our patients for Zak zakan uh being in the bridges program they have had access to various genetic tests along the way very unfortunately you know we have not found to answer for them [Music] got wait [Music] wa [Music] can you [Applause] CL it's fine it's fine nothing nothing happy birthday it's okay it's okay it's okay we still have a figure out a reason why he does not like like sing happy birthdays and why he reacts the way he does happy birthday JJ I think he really just wants to start singing the song but because he can't really like say words that's why he feels a bit [Music] sex oh my God we have three girls and one boy and jayen is second jayen at the moment 16 years old is still non B but he actually understand when we talk to him he will respond by knocking his head nice see Ni yes he lacks a lot of basic human skill I say so he is not able to feed himself or go to the toilet himself or just do simple things like shower himself so he has to be taken care of from the moment he wakes up all the way to he sleeps he tends to have mobility issues right because the limbs are not strong to support his body weight would you already mommy give you a little bit of drinks yes M okay you must chew you must chew then I give you jadden still have some issue with fine Moto skills like picking up small little things with his fingers jayen also have issue with solo so normally we have to cut up his food you're almost finishing you know D than you must jayen was a normal baby at about 12 months old realized that he Jayden is not choring at all neither is he able to actually support himself in a seated position that was when we suspect something was wrong when we realized that Jaden was a little bit unus we had him seen different doctors there were MRI done on him there were spinal fluid Lumar puncture test that was conducted all this came back shows that he was normal well done Jaden we felt lost because uh we have no idea um what's life like for him eventually we got a referral from uh neurologist to actually have him on board of the research program with KK a good try did it we didn't really actually saw much of a hope like we were just thinking at least we are kept in touch with the medical research this was one of the last result left to [Music] us what's this what is this this is a ball yes AA can you see the ball here see what is AA watching yeah they're reading what is this this is a bus oh there's no bus here it's a cycle these are our two daughters AA the Elder one and Siana the younger one SI is very loving she's very social she likes to be around people and she's always happy that's nice AA is a bit of a silent nature she likes to spend her time sitting on the bed and reading books she doesn't like sound and she doesn't like two noisy things or two noisy people the wheels of the bus go round and round round and round and round the wheels of the bus go round and AA was born in India and until the age of 3 months the initial Milestones were quite normal at the age of 6 months you know we expected her to sit but even at the age of 9 months she was unable to sit when we met the Pediatric in in India um there were a series of tests that we were asked to do both for AA and us as parents so this test did not show very abnormal outcomes they were all said to be normal um the only thing that doctors told us is her muscle tone was weak AA was able to sit only at the age of 3 years plus and she walked only at the age of five and we had frustration because we used to go to the doctors and doctors used to say you know we don't know what her exact conditions are okay come hold hold the pencil properly hold color the circle blue Ah that's nice AA loves to scribble actually if I give her a book and a color pencil she just keeps scribbling everywhere and that is how she uh passes her time AA hold the pencil properly hold the pencil properly okay scribble scribble scribble the the sun son son we didn't want to go in for another baby so soon it was only after started walking and things were a little better then we decided to have another baby and before we went in for the second child we wanted to do all the tests and see if there is anything that tells us is not right there were multiple test both for Su and me it was said all is okay right we thought okay I think we can go ahead with uh having another baby when Siana was born I was not concerned whether she would be a special needs I didn't have any worry at that moment everything was normal until the age of uh 3 months her Milestone started getting delayed yeah oh [Applause] wow the last time I saw this place it was dirt dirt okay so we have to start uh cleaning up a bit so we need to first of all vacuum the living room uh then we mop some of the TV TV console area yeah okay [Music] yeah [Music] now jayen and siing were sharing the same big room this new home that we actually got was bigger and the girls need their own rooms now it's time for Jaden to have his own room we are waiting for his um diagnosis to be out we are dealing with his condition at the best we can we were very paranoid uh because um not knowing uh his you also do not know such kind of kids you know what kind of lifespan they will have so there's a lot of uncertainty all right now I'm going to help you a bit okay push your buang a bit higher you can do it okay bo boy oh well done good boy we actually put him on Early Intervention Program with a center from there there are a series of therapies that he go through on three times weekly they have the fysal therapy they have the so-called speech therapy they also have the occupational therapy and a hydrotherapy to strengthen his legs muscles in hydrotherapy they actually train him to walk independently in the pool he love swimming so the reason why we choose this space was partially because it is near to am manity such as a swimming pool this is Jaden's room so he chose this room himself because it faces the pool all four of the kids sleep in the single room because they young also to have someone look after J at night but now this is going to be a first experience for him this is the first time that jayen will have his own [Music] room we are still following up with this doctors for ENT for autopedic for eye Dental just to see whether there are any new other issues that pop up we have been seeing these doctors for more than 10 years some as long as 15 years today we going to bring zakan for his dental appointment good show me how you be good good from the previous Dental uh assessment that he had so they found cavities helloo your number want to sit down here okay so we get to take out his mask and then we have a look at his okay zakons has more cavity so that's why the dentist want to see him um earlier than Zak remember the tooth brush brush the teeth yeah yeah okay atie PA hold your head okay your okay brush your tee okay brush your [Music] tee initially I did see that Zak zakan don't seem to develop as well or normally as other babies okay one more time one more [Music] yeah pains me to see them going through all the but I just have to be strong okay we brushed the bottom already let's brush the top okay have a look very good as time goes on we realize that there's no answer to their condition and and there's a lot of research and test still need to be carried out in order to find that answer so meanwhile we know that we still have to go on with our life we just brush this side then we finish okay you want to put this one you like the banana toothpaste okay there we go you want to do it thank you you can be my assistant today right good you good say good good for me I would still want to know the actual result of the condition although life still goes on that question still lingers behind my head eventually you know there has to be some kind of uh answer to what they have there should be some medical explanation I'm sure that we are not the only uh parents having children like this there's to be some kind of research done somewhere right now it's almost 17 years of waiting and I'm still hopeful of having a proper name for the condition yeah Siana come come good job come come look here look into the mirror come com your com com your Siana rolled at the age of uh 3 months and uh she was trying to roll back uh by around 4 months and uh that that was when we realized that you know she was trying to but was unable to there was no conclusion to AA why it happened what what was the cause and what she was going through and then we had Sienna who was again showing those symptom delayed Milestones right I would go to bed in the night and uh I realized ARA would fall asleep and uh my husband would fall asleep but I would be just staring at the ceiling and crying on my own we definitely did not expect that we thought our second kid would be normal we did feel uh that pain again we have to start our journey all over again with our second child are you happy today let let's go to meet Dr Tom Hi how are you both of them had problems of De development they had epilepsy and speech impairment looking at them they did have features that resembl A syndrome called Angelman syndrome that test came back negative my next thought was possibly this could be the world's first case of a new syndrome [Music] do you want to go in do you want to have your bath AA was off seizures for 13 years but this year she had uh two seizure attacks um let's go and see your room let's go and see your room so today you will be sleeping alone here okay okay

Channel: CNA Insider

Views: 515,958

Keywords: hirschsprung disease, global developmental delay, genetic disease, non verbal, special needs

Id: c1s4Vf1hKp4

Length: 22min 57sec (1377 seconds)

Published: Wed Mar 08 2023