Help Oskar gain the ability to communicate.
Donation protected
Hi,
my name is Maria and my Husband is Doug. We have two beautiful sons and a little girl on the way. Our eldest son Oskar has a very rare syndrome called Nicolaides Baraitser Syndrome. He is one of 3 individuals in Australia with this syndrome and 1 of 200 in the world.
Until Oskar was born we had no idea anything was wrong, all of his scans in utero were perfect. Oskar was born prematurely at 36 weeks but was a healthy 6 pound 2 and was expected to stay a few days in special care and then go home. On Oskar's 10th day in special care we had a peadiatrician tell us that our son likely had a disability, but he was unsure what was exactly was going wrong. He ordered a multitude of tests and after they returned normal results we were referred to genetics Qld. After a long 14 month wait we finally had an amazing genetesist who did a genome sequencing on Oskar and found that he had Nicolaides baraitser syndrome. I was amazed when I was told he was the 3rd to be diagnosed in Australia. Unfortunately because of the lack of research into NCBRS his genetesist was unable to give us an outcome for his future, she could only tell us how Oskar may be affected this included global developmental delay, microcephaly, hypertonia, hypotonia, intellectual disabilities, epilepsy, enlarged joints, scoliosis, small stature and failure to thrive and a shorter than average lifespan. Although this was scary to hear, Doug and I vowed to love our little boy regardless of his differences and to focus on what he would achieve, not what he would not achieve. Oskar is an absolutely amazing little boy, he is an absolute fighter and he is always smiling and bringing joy to others.
Oskar has had 6 surgeries so far in his lifetime and he is undergoing another next year to have a PEG tube inserted to assist with weight gain.
Until Oskar was born we had no idea anything was wrong, all of his scans in utero were perfect. Oskar was born prematurely at 36 weeks but was a healthy 6 pound 2 and was expected to stay a few days in special care and then go home. On Oskar's 10th day in special care we had a peadiatrician tell us that our son likely had a disability, but he was unsure what was exactly was going wrong. He ordered a multitude of tests and after they returned normal results we were referred to genetics Qld. After a long 14 month wait we finally had an amazing genetesist who did a genome sequencing on Oskar and found that he had Nicolaides baraitser syndrome. I was amazed when I was told he was the 3rd to be diagnosed in Australia. Unfortunately because of the lack of research into NCBRS his genetesist was unable to give us an outcome for his future, she could only tell us how Oskar may be affected this included global developmental delay, microcephaly, hypertonia, hypotonia, intellectual disabilities, epilepsy, enlarged joints, scoliosis, small stature and failure to thrive and a shorter than average lifespan. Although this was scary to hear, Doug and I vowed to love our little boy regardless of his differences and to focus on what he would achieve, not what he would not achieve. Oskar is an absolutely amazing little boy, he is an absolute fighter and he is always smiling and bringing joy to others.
Oskar has had 6 surgeries so far in his lifetime and he is undergoing another next year to have a PEG tube inserted to assist with weight gain.
Despite all of this Oskar still continues to smile.
As a family we have hard times, but Oskar's strength and joy for life gets us through.
Just recently we applied to the NDIS for an iPad and accessories for Oskar as his speech therapist said it would help with communication. Oskar used to say some words, however he has since regressed and now does not say anything. He will yell and babble but as his parents we would love for him to be able to communicate with us and with the world. Unfortunately the NDIS denied this and stated it was not reasonable and necessary. I have been through every avenue I can to fight it but continue to get the same answers.
I will never understand how a piece of equipment that could give my child the ability to communicate could be deemed as not reasonable or necessary.
Our good friend Timmy recently contacted us as he wanted to help, so he has decided he wants to do a fundraiser to shave his mullet to raise funds to get an iPad for Oskar.
We are not the type of people to ask others for anything, so it is hard for us to do this, but we really appreciate this amazing gesture!
We are so hopeful that Oskar will learn to communicate with his iPad and be able to show his appreciation himself.
Any extra funding will go towards new orthotics for Oskar which were stolen along with our car this June, towards a pressure mattress for him which will be a godsend and a bed which lowers to the floor and raises up for me to get him out of bed and other medical equipment and expenses.
We appreciate this so so much and honestly any little bit counts and means the world to us ❤️
Any extra funding will go towards new orthotics for Oskar which were stolen along with our car this June, towards a pressure mattress for him which will be a godsend and a bed which lowers to the floor and raises up for me to get him out of bed and other medical equipment and expenses.
We appreciate this so so much and honestly any little bit counts and means the world to us ❤️
As Oskars parents we are so proud of the little boy he is, and so proud he chose us to love him and guide him through life.
❤️
Organizer
Maria Leese
Organizer
Upper Coomera, QLD