Medical Bills preventing Genetic analysis and diagnostic testing for Baby Nathan

Update posted by Schalk Naude On Apr 14, 2017
Nathan was admited to Hospital 3 weeks ago and is currently still in hospital. During this time Nathan spent 3 nights in ICU. This was die to his airway obstruction caused by enlarged tonsils and Macroglosia, this was the initial reason that Nathan was admitted for and in combination with the fever spells, unexplained rashes and blood tests that didnt make sense. The tonsilectomy was kind of placed on hold.

A couple of days ago Nathan tested positive for Epstein Barr virus, Herpes simplex virus and hepatitis and he tested positive for CMV igg (Cytomegalo-virus).
We then orderd CMV Viral load count and his levels were at a significant level of 320 511. Over 300 thousands. Treatment is usually provided for viral loads of 10 000.


Nathan Will be kept in hospital for another 2 weeks for treatment and monitoring.


We are also investigating The tumor marker levels of the AFP test which were also raised to 28 and it has been fluctuating for the last week. Nathans liver function tests als showed problematic liver function. ATS and ALS levels wer both over 600.
Viral infections can cause AFP Levels to be raised but after the spot on his kidney was found in the sonar and knowing that the CMV virus and Epstein barr virus are root causes/triggers for most cancers related to Beckwith Wiedeman syndrome, it is cause for concern.

Although Nathan is not fighting Cancer directly, he fights everything that causes it and we fight everyday to help prevent it.

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Update posted by Schalk Naude On Mar 12, 2017

Hi All.

Just an update on Nathan, I know things have been a bit quiet lately. This is not at all due to Nathan getting better. Things have just been so hectic the last few weeks with one of us now being unemployed, Nathan being in hospital again a few weeks ago and back and forth to the doctor's again. The doctors visits resulted in allot of medication again, and Diagnosis of Severe tonsillitis, Middle ear infection and upper respiratory infection.

Me and Mommy have just been so busy to try stay afloat and awake at the same time. We have also been managing our situation so that Nathans Big brother Ethan doesn't feel neglected due to baby needing so much attention.

The poor little guy has had so much medication in the last couple of months, his HAIR has started falling out 2 day ago. It has fallen out so quickly its scary. We think its the medication, and the Doc also said that she suspects the meds to be the cause.

Beckwith-Wiedemann Syndrome........ What a lesson this has been and still our doctors don't have the answers.

On a positive note, besides Nathans amazing little smile he always has, We have been in communication with the University of Cape Town. The Head of human genetics division, Prof Ramesar, who is busy assisting us in getting a full re-evaluation of Nathan's case and trying to find solutions to assist us in getting assistance with state of the art Genetic tests at the Red Cross Children's Hospital also in Cape town. This will mean Flights or Fuel to get to Cape town. Please Pray for this to realize.

I want to sincerely thank everyone for their support and love for Nathan, and ALL THE DONATIONS FROM YOU ALL. The fundraising has been very slow the last few weeks. We have raised a about total of R6917.00 and are truly blessed and thankful for every last cent. The medical aid has now placed us on audit and for every single thing we need to obtain authorization for. Even if it is for a consultation by his Paediatrician. And now it puts them in a position to decline more claims.

Please Keep spreading the word and Please keep supporting our little Angel.

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Update posted by Schalk Naude On Feb 16, 2017

Hi all, just to update everyone. Baby Nathan is back in hospital and here the latest Update, they say that Nathan has a upper respiratory infection, they will be doing the biopsy on Tuesday and they gona clean his ears as the one has a bit of wax stuck inside. The plastic surgeon will come and see him tomorrow morning then will update on what he thinks. Other than that they are pumping him with iron as his level is very low and again suspect chronic anemia.


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Update posted by Schalk Naude On Feb 04, 2017

Hi all. The Radiologist informed us that he is getting a second opinion on the MRI Report and it will only be ready on monday.

Please pray for our baby boy.

https://m.facebook.com/story.php?story_fbid=135480...

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Update posted by Schalk Naude On Feb 03, 2017

I just wanted to give you all an update. Nathan has just gone in for a Brain, Facial and throught MRI. The paediatrician suspected the growth under his tongue to be a salivary gland tumor and we will know for certain today and how bad it is and if any spreading has occured.

We have already bumped heads with the medical aid this morning and had to sign acceptance for a R25000 zar rand, bill for if the med-aid refuses approval. At least the scans will get done.

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Update posted by Schalk Naude On Feb 01, 2017

Hi all.

Firstly I want to thank each and everyone for their support with what we are facing. We sincerely appreciate everything. Secondly, I would like to update you all on where we are now. Nathan will be admitted to Entabeni hospital tomorrow afternoon. Our Paediatrician has arranged for this and for a Facial MRI on Friday morning. Whether the Medical Aid is going to pay for it we don't know yet. The reason for the Facial MRI to investigate the tongue as it still seems very restricted even after having the tongue tie repair done a few months ago, but most importantly, Nathan has had a type of "bulge" under his tongue and this has gotten bigger and is a concern for our doctor. She is worried that it is a salivary gland tumor. We are hoping for the best and ask all to say a prayer for the little champ. See pic below

.

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Update posted by Schalk Naude On Jan 29, 2017

We just want to let everyone know that Nathan will be going for the Sonar tomorow to see why his Liver is bein naughty. We will let every one know what the result is from the Sonar.

Thank you all for your support

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Update posted by Schalk Naude On Jan 28, 2017

As i mentioned, Nathan has been in hospital since last week sunday the 22nd January 2017. Our doctor orderd a liver function test and the results came back a bit haywire so Nathan will remain in hospital until next week. Our doctor orderd a sonar to take a look at his live so please pray that all will be normal.

Thank you for everyones support.

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Update posted by Schalk Naude On Jan 27, 2017

Please feel free to call us for more info on why we running the fundraiser and how to confirm legitimacy of this fundraiser and the cause or even if you would like to get involved in the goals we want to achieve.

Schalk Naude - +2778 141 5525

Simone Naude - +2782 667 5525

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Thank you Genna for amazing donation we are very greatful and appreciate it more than you can imagine. Thank you . The Naude family

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We want extend our deepest appreciation and thank you from our hearts for this generous donation. From Naude family

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