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Weʼre raising £2,000 to Little Adomas’ journey to a brighter future

Milton Keynesas, Jungtinė Karalystė

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Story

Little Adomas’ journey to a brighter future

30 JULY 2018 * PUBLIC

On 26 October 2015, we became first time parents. We had a baby boy named Adomas. Yet, our tears of joy turned into tears of sorrow the next day…

On his second day after birth during a routine check at the maternity ward, Adomas did not have a red reflex observed on the fundus of both eyes (the child cannot see). Adomas was referred to an ophthalmologist in Kaunas Clinics straightway. Having considered his objective condition and the ultrasound scan results, he was diagnosed with PERSISTENT HYPERPLASTIC PRIMARY VITREOUS (PHPV). It is a very rare disease. Hence, Lithuania does not have any experience in operating such patients. Therefore, little Adomas was sent to Germany for his surgical treatment. Our tears of joy turned into tears of sorrow when we learnt that our dearest angel may never see us or this beautiful world… As hours and days passed, we agonised over ifs and whys.

On 18/11/2015, we had our first consultation in Germany where we were given many hopes in relation to his left eye. We were reassured that this eye would definitely see. The right eye was left to be examined in more detail during his operation.

On 03/12/2015, he had a diagnostic pars plana vitrectomy (PPV) operation on his right eye in Germany and a full retinal detachment found during it. The left eye, according to German doctors, has not developed, thus there is no point operating. Our hopes and dreams for the little Adomas to be able to see were crushed… It has also been mentioned that his left eye responds to light. They said it was a miracle that it responded to light.

When following the first eye surgery German doctors discharged us to continue treatment in Lithuania (where doctors have no experience whatsoever) and when we were sent abroad for treatment from Lithuania, we realised we had no time for the ifs and whys; so we started looking for help all around the world.

Thanks to the people we know, we obtained contact details of an amazing doctor in Switzerland. We wrote to him and quickly received a reply. And off we went to Switzerland with Adomas back in January.

On 28/01/2018, we and little Adomas had a consultation with Prof. F. Munier. The consultation involved general anaesthesia. Following a detailed examination of little Adomas, we were told the following words: “The situation on the right eye is critical”. It must be operated; otherwise little Adomas will lose his eye. One or more operations may be required to save the eye. There is a 5-10% likelihood that the surgery will be successful and 0% likelihood of improvement by doing nothing. The left eye will also be operated. We were not told that the eye had not developed. But it also has a retinal detachment. Both eyes are complicated by a cataract. The situation on the left eye is better though. Nonetheless, both eyes need to be saved! First and foremost, the right eye needs treatment; otherwise our little angel will lose it… The treatment plan is clear. Little Adomas will have to travel to Switzerland multiple times. There is a long treatment journey ahead.

So the little Adomas’ treatment continues for the 3 rd year, this time in Switzerland!

Achievements of Adomas’ treatment in Switzerland: has had both eyes saved, wears removable contact lenses in both eyes made in Switzerland, and sees something with one of his eyes (we will not specify what); we, doctors and a team of our supporters are waiting for him to tell what… At present, we go to Switzerland every 5-6 months.

Every day we live with a hope that fate will bestow great joy upon little Adomas’ eyes…

Our massive THANKS for your support and assistance. Thank you for being with us.

Kind regards,

Adomas, Milena and Robertas

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Aiste Gruzdziuviene

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    Page last updated on: 9/30/2018 2:25 PM

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      Aiste Gruzdziuviene

      Aiste Gruzdziuviene

      Milton Keynesas, Jungtinė Karalystė

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