He Aituā

Lorna Sanders, Tyson Toa and Sam Spencer.

Whānau support needed

I am writing to you today in the hopes that you will be able to help us buy a van to carry our daughter Alisha and her electric wheelchair. Alisha was diagnosed last year at the age of seven with an early onset type of muscular dystrophy known as facioscapulohumeral (FSH) muscular dystrophy. She is the only person in New Zealand with this particular form of muscular dystrophy and there is no known cure or treatment.

Most people are not diagnosed with FSH until their late teens or early adulthood and it is normally passed down through generations. The doctors say Alisha has a new mutation form of the disease, which is why she was diagnosed so young.

This form of muscular dystrophy starts in the facial muscles and over time will affect all Alisha’s muscles. Alisha’s facial muscles began to weaken when she was three. She also began to get frequent ear infections and now has hearing aids.

At the time I was working seasonal work and her dad was working full time so both our children were in day care.

Alisha’s caregiver brought the problem to our attention when they were trying to teach her to smile.

After a few months we began to notice some other things, which didn’t seem quite right but doctors told us everything would come right. In search of a second opinion we went to Dunedin and Alisha was referred to Invercargill Hospital, where she was seen by a paediatrician and neurologist and finally diagnosed with Mobius Syndrome. An incorrect diagnosis, which we lived with for the next two years.

In the middle of 2010, we noticed Alisha was losing more strength so we went back to get yet another opinion. A new paediatrician recommended Alisha see the same neurologist again. This time he diagnosed FSH.

Alisha is now eight, dependent on wheel chairs, or walking aids, and we have been told to expect her to be in a wheel chair full time in about four years. She can still walk around but not much and she often falls. At school she gets funding which entitles her to teacher aid hours and special needs teaching. She is also entitled to special education funding, which supplies her with physiotherapy, learning and equipment needs for within the school.

Alisha Mill.

Special education decided that an electric wheel chair would be good for Alisha for her own independence and safety, and so she could join her peers in the play area. But she struggles to keep up with the other children, which often reduces her to tears.

We had been leaving the electric wheel chair at school full time, we didn’t want to take the risk in bringing it home and not being able to get it back the next day due to weather. This changed on 28 July when Alisha had an accident at home while eating lunch at the table. She had noodles in a cup, with minimal water in the cup, but it was enough to cause damage. Due to her weakened muscles she knocked the noodles onto herself and burnt her thighs which meant a trip to the hospital. This was followed by full time district nurse care and bandage changes every day. She is now back at school, but still it still hurts to move around because the area is still tender.

This could have been avoided if we had a van to get her wheelchair from home to school and back each day. Since the accident, I walk to school with my children, then walk home fast so I can get to work by 9am. After work I shoot home, and then walk to meet the children. On the days Alisha has to take her self-propelled chair to school, I have to lift her in and out of our vehicle, then lift the chair in and out, which is starting to strain my back and shoulder area. Alisha is only eight but just about at my shoulders, as I am only five foot nothing.

We would love to have a van and to be able to give Alisha her freedom outside of the school as we lead busy lives outside of school and work. I coach my daughter’s netball team twice a week. Our oldest daughter plays hockey and in the summer time, I coach the school’s touch team and help coach tennis with my husband. He also plays tennis and is often selected to play for Southland, which has us travelling anywhere from Timaru to Invercargill. And our oldest daughter is now going to tennis tournament in Timaru in October.
At sport, Alisha normally has to sit there and wait till I am free to push her around. If she was able to have her electric wheelchair, she would be able to join in and while we are away on sports trips, she wouldn’t just have to sit there waiting for someone to push her, she could just zip around on her own accord.

We have applied for lottery funding, but have been declined. Enable have provided funding for a hoist only to go into a van. We have also asked Kāi Tahu for help but this is also getting nowhere.

If Alisha is given the right chances, she can become anything she wants to, as this disease affects muscles and not the brain. But she needs her own independence.

I have done a lot of research into vans and the ideal van our family needs cost anywhere from $20,000 up. Enable have now granted us $12,000 for the hoist but have told us to come up with at least $2000 more for modifications.

We can’t get another mortgage from the bank at present because we got a loan last year to do our bathroom up to meet Alisha’s needs and to widen the bathroom area so she is able to get her wheel chair in there. We still have other areas of the house to finish. The deck area needs a ramp so Alisha can go down to the back yard and play with her sister. We still need a balustrade on the front ramp – at the moment we are using our family caravan as a form of balustrade. We recently put new carpet through the house which is more suitable to an electric wheel chair. This cost around $5000.

When we get a van, we would like to make it available to Alisha’s school so they don’t have to use teacher aids’ cars. We hope that you will help us in a time of need.
Honestly a van would make a huge difference in our lives. I thank you today for reading our plea for help and if you need more information, please contact us. Email [email protected], 03 208 6642 or my cell is 027 817 3256.

Melissa Mill.

Mill whānau.