At ArchAngel we understand that caring for a child affected by MLD presents many challenges. We are now in a position to award private grants to individual families and are extremely proud to have helped several UK MLD families to date.
We try to help families primarily in the following areas:
Although our initial focus is on these three areas, we also appreciate that families with children with life-limiting conditions can come up against all sorts of other difficulties. We are therefore also very happy to accept requests for contributions for other one-off items or assistance for a family in need. Our grants are open to benefit children affected by all stages of MLD who are residents in the UK and under the age of 18.
We understand that there are a number of pieces of specialist equipment that are not funded by the NHS but which are essential to allow families to have as 'normal' lives as possible, for example chairs, car seats and push chairs. Children with MLD usually have very low muscle tone and spinal weakness, which that means that standard chairs, car seats and push chairs are not suitable for their needs as they do not provide adequate support. These items can be very expensive, however we will endeavour to fund such purchases where possible.
For many MLD affected children, intensive blocks of physical or occupational therapy can make a real difference to their comfort and quality of life. Unfortunately the NHS has very limited provision for such therapy and the infrequency of appointments can often result in them being of little benefit. We are able to fund intensive blocks of therapy, for example twice weekly as opposed to once monthly. This approach has proven to be effective for several MLD affected children due to the frequency and consistency of the treatment.
We know that many families take great joy in providing care to their MLD loved one so that they can remain at home, however we do not underestimate the physical, emotional and financial consequences which this can have. Life can be overwhelming without time or opportunities to enjoy the everyday things in life or the chance to simply rest and restore energy reserves. We would like to offer support to caregivers, whether in the form of help in the home or with respite care, to allow them time to complete everyday tasks, to spend time with other children and to take a much needed break.
ArchAngel will consider making contributions for one-off items or for assistance for a family in need, further to a referral from a medical or social work professional known to the family. For example, help towards the cost of home modifications.
Please email us to request an application form. All application forms must be supported by a referral from a medical or social work professional known to the family. Please state the urgency of your application, we are able to turn grants around quickly if a family is in very urgent need.
We are always in urgent need of donations to help fund our grant programme. Occasionally we run short of funds and can’t help families as much as we would like to. In these circumstances, we would always try to help families find financial support from other organisations, including: