Le Chéile do Molli-Lets get Molli Moving
On the 25th of November 2018, Molli Ní Mháille de Búrca was born a healthy baby girl weighing 7lb 6oz. She reached all her milestones and was a very happy baby and brought nothing but joy to her parents Amanda and Michael and older sister Shayna. All of that was soon to change and in June 2019 Molli was diagnosed with a severe Genetic Neuromuscular condition called SMA Spinal Muscular Atrophy type 1, also known as Werdnig Hoffman disease. The condition causes Mollis muscles to die. Molli started her spinraza treatment last July in Temple Street Children’s Hospital, it involves a lumbar puncture procedure every 4 months. Thankfully she is responding well to the Spinraza and it is slowing down the progression, it is a life limiting illness and unfortunately there is no cure for SMA. Molli has no ability to move around. She has no muscle tone in her legs, very limited abilities in her arms and can use her hands well enough to lift her beaker for a drink and to feed herself. Molli will never walk. She can’t roll around or lift her head on tummy time as her back muscles are incredibly weak. Molli sleeps well at night, but needs to be turned from side to side a few time’s a night. Molli also suffers from aspiration. She’s on grade 2 thickened fluids and can’t have mixed consistency foods. She is always at risk of being sick and can get sick quiet quick.
Molli has a lot of different needs on a daily basis. She could have anything between 3-5 appointments every week. The money raised from this page will go towards Mollis day to day expenses. It has been set up to hopefully take some of the financial burden off the family as Mollis Mom Amanda couldn’t return to work as Molli needs 24 hour care. She will need to add mobility aids to her home which isn’t built yet and the mortgage won’t cover it. They will get no funding for help towards the aids as it is a new build and not an existing house that needs altering. She will also more importantly need a powerchair. These are very hard to come by as Molli is still so small and the waiting list is very long.
Our aim is to get Molli moving and to get her as independent as she can be. The earlier the better for her and her independence. She is an incredibly bright little girl who is full of life and devilment. All we want is that she can move around freely on her own and get the most out of life.
Ar an 25ú Samhain 2018, rugadh Molli Ní Mháille de Búrca, cailín beag álainn sláintiúil, 7 bpunt agus 6 unsa. Bhí ag éirí go maith léi, í ag baint amach a cuid garspriocanna sa saol agus í an-sásta. Chuir sí an-ríméad ar a cuid tuismitheoirí Amanda agus Michael agus a deirfiúr Shayna. Faraor, ní raibh sé i bhfad gur athraigh an scéal agus i mí Meitheamh 2019, dhiagnóisigh Molli le néaramhatánach géiniteach, SMA (Spinal Muscular Atrophy type 1) nó An Werdnig Hoffman disease mar is fearr aithne air. Tinneas é seo atá an-dian. Cuireann an tinneas seo deireadh le matáin Mholli agus faigheann siad bás. Thosaigh Molli a cóir leighis Spinraza i mí Iúil seo caite i nOspidéal na Leanaí, Sráid Temple i mBaile Átha Cliath. Bíonn uirthi gnáthamh leighis polladh lumbach a fháil gach ceithre mhí. Buíochas le Dia tá an cóir leighis Spinraza ag obair agus é ag laghdú dul chun cinn an tinneas. Is tinneas é SMA a chiorraíonn saol duine agus ar an drochuair níl aon leigheas air. Níl an ábaltacht ag Molli le bheith ag bogadh timpeall. Níl aon láidreacht sna matáin ina cosa, fíor bheagán ábaltacht ina cuid lámha ach tá a dóthain aici gur féidir léi a cupán a chrocadh chun deoch a thógáil nó bia a ithe. Ní bheidh Molli in-ann siúl go brách. Ní féidir léi iompú thart agus ní féidir léi a cloigeann a chrocadh suas nuair a bhíonn sí ar a bolg mar gheall go bhfuil na matáin ina droim ró-lag. Codlaíonn Molli go maith ach bíonn uirthi a bheith casta ó thaobh go taobh cúpla uair san oíche. Tá Molli ag fulainght lena cuid análú. Tá sí ar ghrád 2 sreabháin tiubhaithe agus ní féidir léi bia le comhsheasmhacht meascatha a bheith aici. Tá sí i gcónaí i gcontúirt a bheith tinn agus is féidir léi fáil tinn an-tobann.
Go laethúil teastaíonn go leor aire a thabhairt do Mholli. D’féadadh sé go mbeadh 3-5 choinne aici gach seachtain. Beidh an t-airgead ón bhfeachtas seo ag dul i dtreo costais mhaireachtála Mholli. Tá sé bunaithe chun beagán den ualach airgeadais a thógáil dá muintir mar nach raibh matháir Mholli, Amanda, in ann dul ar ais ag obair de bharr go bhfuil ar Molli aire 24 uair a chloig a fháil. Beidh orthu an teach atá siad a thógáil a leagan amach sa gcaoi go mbeidh sé feilliúnach do Mholli agus ní chlúdóidh an morgáiste é sin. Ní bheidh siad in-ann aon mhaoiniú a fhail chun cabhair a thabhairt dóibh de bharr gur teach as a nua atá siad a thógáil agus nach teach é atá acu cheanna féin a mbeidh athchóiriú le déanamh air. Níos tabhachtaí ná sin beidh cathaoir chumachtach ag teastáil uaidh Molli. Tá sé thar a bheith deacair theacht ar a leithid mar gheall go bhfuil sí chomh beag agus tá an liosta feithimh an-fhada.
Is í an aidhm atá againn ná cabhair a thabhairt do Mholli agus an deis a thabhairt di a bheith chomh neamhspléach agus is féidir. Chomh luath agus a tharlaíonn sé, sin é an chaoi is fearr é di féin agus dá neamhspleáchas. Is cailín beag thar a bheith éirimiúil í Molli agus tá sí lán le brí agus fuinneach agus neart diabhalaíocht inti freisin. Níl uainn ach go mbeidh sí in-ann bogadh thart as di féin agus leas a bhaint as a saol.
For more information please contact:
Máire Caitríona Ní Dhonnacha (087)7751601
[email redacted]
Emma Ní Mháille (087)2230268
[email redacted].uk
Audrey Friel (087)9311245
[email redacted]
