Totally Stressed out Parents !!!!

Hi,

totally stressed out over the seriously poor level of support and intervention we are being given...

have a daughter who's 7 in august, she was diagnosed with microcephaly from 12 weeks old and last year genetics diagnosed her with a very rare trio gene mutation mrd44 and downgraded her microcephaly as merely a characteristic of her mrd44

we are a home ed family but have effectively shut out from any access to support..we merely see our paediatrician every 10 months, waited almost 2 years now for an education healthcare plan assessment but we don't have anyone else involved so doubt we will get an assessment..

we used to have a neurologist, o.t, play therapist, p.t and family support worker involved when living in Ireland but soon as we moved back to the uk we never got referred to any of those services..

we are totally at a loss as to what we are expected to do.


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