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NEVER NEVER GIVE UP!!!!!!!!! Dante’s Journey with Schinzel-Giedion syndrome

Danté’s life journey started on 31 March 2015 and the doctors immediately noticed that something was not intact so he was admitted to NICU immediately. They started

doing all the necessary tests as the doctors suspected some type of syndrome. The main 4 chromosomes were tested and we received the results back in a week of which the results were normal. The rest of the chromosomes were tested and we received the results back 5 weeks later which were also normal (So we thought). Ultrasounds and X-Rays were done throughout his stay in NICU where they constantly monitored

his brain, heart, chest, abdominal area as well as his kidneys. A cat scan was also done on his brain as abnormalities were suspected where 1 cyst have been identified.

Abnormalities in the kidneys were also detected. He was in NICU for a month where we had to teach him how to drink where feed was done through a tube to make sure he receives the correct amount of milk/food to build his strength. He was strong enough after a month and could drink by himself the necessary amount to be released from hospital. This was done to make sure he can suck as his ability to suck was not strong enough (Little did we know what the actual reason for this was). It took a lot of patience and time to teach him this ability. An Occupational Therapist was also assigned to help us with this ability and to assist with his mobility to lift his little neck and to move his body. Life at home was extremely challenging, but not so much that we thought that anything else could be wrong. We sat for at least 2 hours with every feed as his ability to drink was still developing.

At the age of 3 months Danté was rushed to the emergency rooms with an extremely high temperature. You could see in his eyes and even the colour of his skin that something was seriously wrong. Tests were done and the results came back where he had severe kidney infection where he was admitted to hospital to give him antibiotics through IV. He was in hospital for about a week. A day before he was released I requested that Dr. Banieghbal, a Paediatric Surgeon should be called out to see Danté to assess his condition. Dr. Banieghbal went through his sonars and MRI as this has also been done whilst his stay at the hospital at the age of 3 months. The Surgeon made a discovery which we could’ve never imagined…Danté was born with 4 kidneys and a double ureter, hernia in both his testicles where bowl moved into his #testicals which caused severe swelling and pain.

He also realized that Dante had not 1 but 2 cysts on his brain with pressure building and where the ventricles were enlarged with the cysts developed inside of 2 ventricles, parts of the brain never developed. Plans now started falling in place to have the surgery done to help Danté as his 1 kidney caused obstruction which caused the kidney infection and the hernia was extremely dangerous which had to be fixed immediately. But the surgery could not be done right away as his infection count was too high and this is a risk for the operation. We waited a week and then took him for blood tests again to see whether the infection count was low enough, but it was still high. We again waited another week and tested his blood again where the count was low enough for the operation. The operation was scheduled for the 7th of August 2015 which we now prepared ourselves for.

This was a 3-hour operation where the 1 kidney and 1 ureter will be removed, both hernias in his testicles will be fixed and he was also circumcised. The operation was done in half the time as expected. A day after he was operated on, he was lying in ICU and got an epileptic fit in front of the doctor. I have been arguing with doctors since he was 2 months old that it’s epilepsy where I was told that it was stomach cramps and by God’s work he had 1 in front of the doctor where they would now believe me and start treating him (Little did I know what these chemically toxic medication would do to Danté). No EEG was done and no levels were checked which meant that he still got convulsions which were out of control. Besides the convulsions, he was doing extremely well after the operation. I can’t believe the fighting spirit this little angel had and the strength he has shown us.

He went for his check up after 6 weeks and Dr. Banieghbal was satisfied with his healing. He healed extremely fast and was doing well. Besides the fact that he still got infection which we are trying to keep under control (3 months now no infections). The Convulsions kept getting worst…Which we ended up going to see Dr. Lippert, Pediatric Neurologist, to see whether we can help our little angel. EEG was done and it was confirmed…The electric pulses going through his brain was extremely high which we had to sort out. But this was not all…Dr. Lippert was suspecting some sort of syndrome which I have attached the letter hereto. Our appointment to see the Genetic doctor was the 18th of January where we hoped to receive an answer. Living in the dark is killing us. It’s so frustrating knowing something is not right and no one can help us.

I thank Jesus for the fact that we could get the money together to go and see Dr. Lippert and that he could help us and send us on a road to where we can get answers. There is light in the tunnel, because there is nothing worse than a mother and a father not being able to help their baby. If we know what is wrong (No matter what it is) we can help him. Danté’s time with us was stressful, emotional, tiring…If only we knew the answer earlier…All I wanted to do was to help him…The results came back from Holland positive for #SchinzelGiedionSyndrome.This also gave us answers for the death of our second born.His name was Talén, born 11 September 2011.Passed away after 11 days on the 22nd of September. No one could ever explain what happened, but luckily the Genetic doctor kept his #DNA which we could send to Holland with Danté’s DNA as well as mine and my husband’s.After 5 years of wondering and constantly blaming we found out that both of them had Schinzel Giedion Syndrome.This is one of the most rarest diseases.

Schinzel-Giedion syndrome is a severe condition that is apparent at birth and affects many body systems. Signs and symptoms of this condition include distinctive facial features, neurological problems, and organ and bone abnormalities. Because of their serious health problems, most affected individuals do not survive past childhood. Children with Schinzel-Giedion syndrome can have a variety of distinctive features. In most affected individuals, the middle of the face looks as though it has been drawn inward (#midface retraction). Other facial features include a large or bulging forehead; wide-set eyes (#ocularhypertelorism); a short, upturned nose; and a wide mouth with a large tongue (#macroglossia). Affected individuals can have other distinctive features, including larger than normal gaps between the bones of the skull in infants (#fontanelles), a short neck, ear malformations, an inability to secrete tears (#alacrima), and excessive hairiness (#hypertrichosis). Hypertrichosis of ten disappears in infancy. Children with Schinzel-Giedion syndrome have severe developmental delay. Other neurological problems can include severe feeding problems, seizures, or visual or hearing impairment.

Affected individuals can also have abnormalities of organs such as the heart, kidneys, or genitals. Heart defects include problems with the heart valves, which controlblood flow in the heart; the chambers of the heart that pump blood to the body (ventricles); or the dividing wall between the sides of the heart (the septum). Most children with Schinzel-Giedion syndrome have accumulation of urine in the kidneys(hydronephrosis), which can occur in one or both kidneys. Affected individuals can have genital abnormalities such as underdevelopment (hypoplasia) of the genitals. Affected boys may have the opening of the urethra on the underside of the penis (hypospadias). Bone abnormalities are common in people with Schinzel-Giedion syndrome. The bones at the base of the skull are often abnormally hard or thick (sclerotic), or the joint between the bones at the base of the skull (#occipitalsynchondrosis) can be abnormally wide. In addition,affected individuals may have broad ribs, abnormal collarbones (clavicles), or shortened bones at the ends of the fingers (#hypoplasticdistalphalanges).

Children with this condition who survive past infancy have a higher than normal risk of developing certain types of tumors called #neuroepithelial tumors. Danté was in and out of the hospital, struggling with infections like kidney and bladder infection,

pneumonia, rota virus and the 10 weeks ag he was in hospital with a virus in his blood which spread to his brain and therefor ended up with metabolic disease which affects his brain functions. Basically what it does is that it tells your body to stop working in the body. He also became paralyzed at 10 months. His kidneys were also not draining

which meant that they would’ve operated again.This never happened as he passed away before this could happen. Whilst one of his stays in hospital we have also done another #EEG scan to see whether the nature of Dante’s epilepsy have improved, but it seems like it is actually worse than the one done in November 2015 which therefor meant that the medication he was on (Even though it’s so strong) was not working in the least.

After doing research on Schinzel Giedion we found that there is not one Epilepsy medicine that keeps the convulsions under control.We stopped his medication gradually the past he has been off all medication for a month now.The medication he was on was actually causing his organs to slowly pack up (Having the syndrome was already making his organs pack up so the medication was just worsening the situation). He for example couldn’t pass urine by himself. We had to find a neurologist, nefrorologist and a paediatrician that will be willing to become part of a team at Donald Gordon to make sure Danté receives the best medical care. He also started seeing an Occupational Therapist as well as a Physio to build on his Milestones which he was behind on. At 14 months, he was like a 4 –6 month old baby. His immune-system was extremely low and became ill really fast and through this he was constantly on antibiotics and other meds on top of his generic medication daily.

I can confidently say that he was on no chemical medicine for the last 7 weeks of

his life.Not even panado. I read up on all medication before I gave it to him, because even though the doctors prescribe the medicine we found that he is not allowed to dr

ink the medication with his epilepsy and makes the convulsions worst and more often.

We were just not getting a break, he was in hospital 1 – 2 times a month.After we got home the last time he was discharged from hospital he ended up having a fever again, stuffy nose and his chest sounded horrible and on top of all this he became constipated. All of this after he was in hospital for 2 weeks on antibiotics.

I actually didn’t know what to do anymore, but I had my plans and we were hoping to heal him. I also got in contact with a Dietician as well as a Professor and we were going to try and sort his diet out to build on his immune-system. The 15 months of his life was hell, but a blessing in more than one way…We would have done anything to get our baby better and to live a quality life, without pain and suffering and just to have the most amazing life that we can offer him. The genetic tests have been returned and we can finally put a name to our precious angel’s condition, as well as Talen’s condition after 5 years. They both were diagnosed with Schinzel-Giedion Syndrome. Only one of the 18 children diagnosed with this home-wrecking syndrome has been on the natural medication which we are giving him and as odds may stand, Sadie, made it to her second birthday and I was getting in contact with the Dr. in San Diego to get us 2 families in touch to find out how Sadie is doing and how her life was changed since she’s been on this amazing plant.

My personal opinion – It’s the actual medication which is prescribed that is the enemy and I will not allow this toxic chemicals to end my babies life. Just from being a month on this strong medication, my precious boy’s organs (kidneys and bladder) started giving in. But – After being off the meds he actually started passing urine by himself again. Remember – It’s not the syndrome that ends these angel’s lives, but the side effects from having the syndrome which affects their overall health. And WE were winning with our precious little one. I am happy to say that it has been the longest still that Danté has been out of hospital since the Metabolic Disease and he was going strong. Seizures were also getting under control and we were hoping and believing that it would be under control.

Sadly this was not the case –My little angel passed away the 13th of July, 2016 and this has been an extremely long journey for us.But we are ok, we learned a lot from him and will never forget that our 2 angels saved us.We were lost and through their death we were found.2 weeks after Danté’s death we ended up at New day Church in the Westrand, Gauteng and our lives were changed.I want to thank our Father for helping us through this horrible time.The enemy came to kill and destroy twice in our lives, but we are even stronger now than ever before.Our motto –NEVER NEVER GIVE UP!!!!!!!!!Because we all have eternal life even though all odds are against you.God is holding you even though it doesn’t feel like it in the situation you are in.We saw this only after everything.God is always with you.Thank you my angels for showing us the light and showing us what it truly is to live.

We love you

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